About

I was diagnosed with Eale’s disease in the Spring of 2008 and had vitrectomy in June in hopes of regaining some of my vision that had been distorted.  Before the initial onset of this eye challenge I had perfect vision.  I am 33 year old, white male, relatively healthy.  If you happen to have also been diagnosed with this really odd disease I would love to hear from you. 

Disclaimer:

I have eale’s disease and although I do enjoy playing Doctor with my wife, I am in no way affiliated with any medical field, pharmaceutical company, etc, thus the advice you are getting from this website is from a patient.  While I would not ask a brain surgery patient about their intricacies of their procedure it seems only right to find out something from other Eale’s patients as the professional medical field does not provide us with much useful beta other than a shrug of the shoulders and a scratch on their head.  Do not get me wrong, it is not as if they are not trying there is just not that many of us to practice on.

134 Comments

  1. Dawn Felton said,

    December 26, 2008 at 11:41 am

    My brother was diagnosed last year with Eales disease…..He has had surgery to regain a good bit of his sight. The doctor said that peoples of mostly India descent and the Mediterranean get this disease. My brother needs surgery again….he will lose his sight if he does not get the surgery. We are said to be half spanish / half American Indian. I have traced my ancestry and most of the professionals claim that there is nothing more than white European in our bloodline. Somewhere there must be a mistake. Oldest brother dark skinned, Middle brother Red skinned, and I am light to medium brown skinned. My brother will not talk about Eales disease much. He went to Jackson, Ms. for his surgery. Please continue to contact me ….I greatly appreciate your opinion. I have very little research on this subject.
    Dawn

    • erareeve said,

      December 27, 2008 at 11:14 am

      What kind of surgery? I had a vitrectomy in June, and now we are playing the waiting game. I am originally from Jackson, so this is kind of interesting to me. Which Dr did he see?

  2. M.M. said,

    November 29, 2010 at 7:53 am

    Hello, I’m glad to find your site. I was diagnosed with Eales Disease in 2001. Now I’ve just made up the site http://www.ealesdisease.info in which I presented my case like you did here. I have also put a link to your case and many other cases.

  3. michele said,

    December 8, 2010 at 8:13 pm

    I am 53 year old woman. I a had a hemorage in one eye, followed by a vitrectomy, and no rebleeds for 9 years. In the last two years I have had a reoccurring hemorage in the other eye. Within one week of the vitrectomy my vision was back to ‘finger count’ only. They have tried to treat it with laser and that was not beneficial. They then treated it with Avastin, a chemotherapy drug injected directly into the eye. This has held me pretty well for almost a year. I am wondering if anyone else diagnosed with this also had a positive Tuberculosis test reaction. I did do the 9month drug regime due to the latent TB infection. Anyone else know anything about this?

    • erareeve said,

      December 9, 2010 at 1:07 pm

      No TB positive for me. I did have a vitrectomy and I still have a pucker or edema which is causing some distorted central vision. If I focus on your head with one eye it will look like a shrunken head. Sorry to hear about the other eye. I am a couple of years in now and no changes in my right eye. I am keeping my fingers crossed.

    • lifejust4u said,

      March 13, 2012 at 3:23 am

      Dear All & michele,
      I have gone through all messages and reply given on this page.
      Kindly note that TB is not a main reason for Eales disease (ED) – it may be one of the so many reasons. Better, one should be very careful before starting any treatment for TB – as TB treatment it self has a lots of other issues..!
      Let me tell you, constantly I’m watching and searching world wide (best as my level) for what is going on in the world for treatment of Eales disease?
      Unfortunatly, ED has more patients in India and subcontinents, and very few % are in US and Europe.
      Treatment can be done on case to case and complexity of ED (Eales Disease).
      However, early finding and treatment can give you better result.
      Wysolone (prednisolone) Steroids are a common medicines given by doctors – one should not take the same without consulting physician.
      Few cases of heavy bleeding may require a immediate surgery to prevent further loss of sight…!*
      I can suggest from my side to take maximum fruits and green vegetable juices in your diet.
      Kindly note that ‘Dr. Mahesh Shanmugam” from “Sankara Eye Care Institute – Bangalore – India” is a “very senior and world famous” doctor – who has performed numbers of surgeries and treated successfully lots of patients with ED. (Humble request – not to consider this as a marketing) http://www.sankaraeye.com/index.aspx As mentioned above India has more patients of ED compare to other part of the world.
      Hope, you may find above information useful..!
      Last, I would like to thanks to all of you for sharing your exp. regarding ED.
      This will help to lots of people who are suffering from ED.
      In case for more details please contact me on my email.
      Regards,
      Yours true friend,…

      • Dave said,

        April 6, 2015 at 4:53 am

        Thank you, it helps. But can you tell me how much the cost was for the treatment in sankara?

  4. Tony said,

    December 28, 2010 at 10:10 am

    I was also diagnosed with Eales disease in Feb 2007. I had 2 vetrectomies, one in each eye. I have had 12 in office laser surgeries, 6 in each eye. This was all in 2007 and my vision was restored back to 20/20. However just a few months ago it started again. This time I am having trouble with my viens shutting down. My Dr. is putting together a plan to see why this is happening. I have a stationary large grey blot blocking about 25% of my vision in the left eye. I do photography on the side to earn money so this is frustrating.

  5. michele said,

    January 19, 2011 at 7:02 pm

    I am now back into a full rebleed, with only light and dark vision in one eye. Is anyone out there having any success with their treatment? Let me know!

    • Reeve McNamara said,

      January 19, 2011 at 7:27 pm

      I feel as though mine has been a success. I saw Dr. Yan at Emory

    • erareeve said,

      January 19, 2011 at 7:29 pm

      I feel like mine was a success. I saw Dr Yan at Emory Eye Center in Atlanta.

      • michele said,

        January 20, 2011 at 9:45 am

        rearlier post mentions a vitrectomy in June, did you have any other treatment or bleeds after that? The vitrectomy itself does not prevent subsequent bleeds, it only clears the blood that is present in the vitreous at that time. My problem is that eye continues to bleed even after the vitrectomy. Chemo and laser treatment to seal the blood vessels has not worked for me.

  6. mel said,

    July 1, 2011 at 2:25 pm

    hi i am a 22 years old female and i have lived in devon in the united kingdom all my life i had my first bleed in my left eye start of october 2009 and at the end of october 2009 my right eye started to bleed to and i have recenlty been diagnosed with this eales disease i have had surgery twice one in each ee and laser treatment in my right eye during my last operation 6 weeks ago. my first operation in my right eye was in september 2010 and like i said my second one was in my left eye and that was 6 weeks ago but so fast nothin has worked im starting to lose hope as for the last 2 years near on my eyes have continued to bleed twice a month every month i have 2 very young children and its very frustratin. has anyone has successful surgery cos it dont seem to be working for me.
    i am also going to my DLA tribunal in 2 weeks for this disease could anyone help me with that im so scared even though i have nothing to hide and told the truth the whole time im just scared as i dunno what they gonna ask and if im wasting my time even though my consultant has said it will never get better and i will proberly lose my sight completely in years to come.
    thanks mel x

    • mteksolution said,

      February 28, 2013 at 3:39 pm

      Eales is not a blinding disease. It is a treatable but incurable disease.
      Go to Shankara Nethralaya in Chennai India. That is the best place. I have been diagnosed with ED in 1993. Had a vitrectomy and that worked although made me very myopic, but no rebleeds. The other eye was treated with laser a few times, which seems to be working for many years.

  7. mel said,

    July 1, 2011 at 2:27 pm

    sorry the last operation was in my left eye and my first operation was in my right eye x

  8. shirley arakaki said,

    September 1, 2011 at 5:17 pm

    In 1965, my husband, while stationed in Korea experienced Eale’s disease in his right eye. He was air vacd to Hawaii, Tripler Hospital and after a month was diagnosed with Eale’s disease with TB in his lymph node. He was hospitalized for about 6 months, with medication to treat his TB. Vision in his left eye never returned, and he was also warned that his R eye would also be hampered. After his release from tripler, he saw doctors outside of the military since this disease was fairly new and could not be diagnosed. He did also suffer with hemorghagging in his R eye and had to be treated with photocoagulation. Finallty, in l974, we went to the Boston Eye Clinic where he had a victrectomy for his L eye and laser treatment for his R eye. Vision to his left eye never returned but he has a distorted, smoky vision to his left eye which is considered to be blind. Over the years, he has suffered with numerous hemorghagging to his right eye and treated with laser. He is not allowed to carry and lift anything over 10 pounds. Many a times when he suffers with hemorghagging, he sees floaters like jelly, dark spots and distortion in his right eye. His latest treatment was done in 2010 in Hawaii at the Retina Consultants of Hawaii. He was treated with a certain procedure at the Retina Consultants by a well known doctor who has treated many
    patients with retinal tears, hemorghagging and detatchments. I hope this information is helpful.

  9. Laura Dunham said,

    September 25, 2011 at 4:52 pm

    My husband (Chris) was diagnosed with Eales disease in 1968, when he was 8 yrs. old. He was initially treated at by pediatric ophthalmologists at The Ohio State University with massive oral doses of steroids as well as steroid shots into the eyes. They referred him to Dr. Robert Ellsworth in New York City who not only had seen patients with this condition, but was working with a physician that was using light coagulation ( laser). My husband went to New York every 6 wks. to have the bleeding vessels in his eyes cauterized. Remarkably, he has maintained his vision.

    At the age of 28, he had to have cataracts removed form both eyes and lens implants.

    He is now 51 and sees pretty well. He has issues with his vision blurring due to all the scar tissue in his retina, but the disease appears to be dormant. The biggest issue he has is almost constant eye aches that no one seems to be able to figure out. He has had this issue for as long as he’s had Eale’s disease and we wonder if it is due to nerve damage from the laser of somehow tied to the abnormal vascularization of the eye.

    • erareeve said,

      September 26, 2011 at 9:34 am

      Ah, the eye ache, thank you for bringing that up. I thought it may just be a psychological thing with me. It i not very painful and not constant, but I do have frequent occurences of what feels like some kind of pressure.

      • Neil said,

        July 5, 2012 at 6:40 am

        Hi there,

        I have had eales disease now for a year and have had two laser surgeries. My vision is not great in my left eye. My main problem is the constant pain I experience in my eyes like a pressure.

        Did you ever find treatment for the eye ache?

        I am really desperate and don’t know where to turn. doctors over here in the U.K don’t know how to treat this properly.

        I appreciate any advice.

        Thanks
        Neil.

  10. catherine said,

    November 22, 2011 at 4:03 pm

    Hi, this is mainly for Mel from Devon. I am a 37 year old female, I was diagnosed with eales disease ten years ago. I had a vitrectomy and laser treatment nearly ten years ago and all has been good so far (touch wood). I was living in Cornwall when it first happened and the doctors there did not have a clue what was going on, same in bristol. I am from the Midlands and moved back home, the doctors at Birmingham eye hospital knew exactly what was wrong. Where are you being treated?

    • erareeve said,

      November 24, 2011 at 4:44 pm

      Thanks for sharing your experience. I am in the states in Atlanta being treated at Emory universirty. Has your other eye had any challenges?

    • Michele said,

      November 30, 2011 at 9:03 pm

      I am being treated thru the VA in Little Rock, I live in Branson. I have had several vitrectomys and laser, Most recently they are treating it with Avastin (chemo) injections into the eye. in attempts to seal the blood vessels.

    • Mel said,

      April 13, 2013 at 10:00 am

      Hi Catherine I’m really sorry for the late reply I have only just seen this! I am being treated at Bournemouth hospital by mr Morris he is absolutely fantastic, even though I’m stil suffering 4 years on he has done and stil trying to do his very best for me x

  11. Mary Harrington said,

    December 2, 2011 at 7:56 am

    Hi
    I am a 47 year old female diagnosed with eayles 10 years ago I have a fantastic Doctor in Boston Ma. When I was first diagnosed I had two small children and onset was overnight in both eyes. It was the scariest thing, as my local doctors could not find the root of the problem. After almost a year of constant laser surgery and a vitrectomy in my left eye I went relatively symptom free for almost 7 years. This past February I had a major bleed in the right eye once again the same procedure all over again. However this time the recovery from the vitrectomy
    went awry six months later they still can’t stop the leakage even after several injections I have become quite frustrated but have great faith in my doctor. I wish I had found this sight years ago as I feel that this is such an obscure disease and know one seems to understand it. I will keep you informed of my progress anyone have suggestions I would welcome them.

    • erareeve said,

      December 6, 2011 at 4:59 pm

      Mary,
      Thanks for sharing. I have always wondered if it will affect the other eye. My Dr. says it is a 50/50 chance. Sorry you are having to go through the process again. How is your vision?

      • Mary Harrington said,

        March 2, 2012 at 6:17 pm

        My vision is improving I am still on 4 different eye drops and have had multiple Avastin injections. But every day it seems a little better.
        In April I am getting news lenses as all the medications have caused cataracts. Hopefully soon it will all be behind me.

  12. Connie said,

    February 16, 2012 at 6:02 pm

    Hi all,

    I am a 68 year old African-American female in Ky. My doctor was kind of puzzled but diagnosed it as Eales disease in the spring of 2010. I had no symptoms (as a matter of fact, it was in my left eye—the eye with better vision) and had the preliminary TB test with negative results. By summer, I’d had laser surgery. I just returned from my eye exam and it seems it has reoccurred. I am awaiting my doctor’s recommendation and not very hopeful that I can avoid another surgery.

    • Mary Harrington said,

      March 2, 2012 at 6:13 pm

      Hi
      I am a 47 year old female who was diagnosed with eales at age 37 and was treated with lots of laser my sight returned to 20/25 amazing results.
      I have recently had another bleed and it has been quite problematic they have given me complete vitrectomy and are now treating me with Avastin.
      My Dr. is Delia Sang Brookline Ma. I have seen multiple retina specialists in the last thirteen years Mass eye and ear, Tufts Medical, etc. Dr. Sang taught at Harvard and I feel I am finally in good hands. Please call me direct with any questions , I also have a nineteen year old and I can not imagine what your going through. Thank God its me and not one of my children.
      Sincerely
      Mary Harrington
      508-896-8690 (H)
      508-326-7915 (C)

  13. Lolita Bynum said,

    February 28, 2012 at 3:00 pm

    I’m just trying to reach out to others that maybe can share some of there experiences with me.
    My son who is 18 has been healthy all is life. On 2/7/12
    jumped at school on a high jump when he got up everything was very blurry in his right eye. After going to the optometrist we were told we needed to see a retina specialist because there was so much blood behind the retina. The first retina specialist we seen thought he may have ischemic vaculitis, the specialist we started seeming the following Monday believed it could be vaculitis or eales. We did an MRI, chest xrays and a ton of blood work all has came back negative. They want to send us to a rheumatologist to rule out vaculitis. He has been on an abundance of steroids and now they want to do a steroid injection. His sight went from 20/85 to 20/250 in one week. They have said there is no tears just bleeding vessels that the blood hassettles behind the retina. I’m looking for a doctor that has had an eales patient. I have search all over Houston and have came up empty handed. I’m willing to travel. If you can help please let me know.

    Thanks
    Lolita bynum

    • Katharine Chavez said,

      December 14, 2016 at 5:43 pm

      I have seen doctor Robert Reidy at Eye Associates of New Mexico. I was diagnosed with ED when I was 12 years old. I was the youngest in the nation (of four diagnosed with Eales at the time, I was told). After several laser surgeries and many open eye surgeries in both eyes…my right retina finally detached. My left eye is 20/30 and remains stable although there is tugging on the retina and a tear from scar tissue. Dr. Reidy does not want to do any more surgeries on my eye until it completely detaches. He feels there is a 50/50 chance of me losing complete eyesight with surgery so he wants me to wait.

      Weven traveled the US finding a doctor who would work on me (back in the early 80s) and not one doctor had a clue what was going on. Dr. Reidy chose to do his best with my eyes and I blessed! He is wonderfulooking.

      Kat

      Chavezkatharine@gmail.com…or Kat Chavez, NM…on facebook.

  14. Salman Ansari said,

    April 12, 2012 at 4:40 am

    I was diagnosed Eales disease at age of 25 in 2005. I was reading a book while eventually i saw two drops of blood going upward in my right eye. I thought it was too late to read book at night and may be i cannot see properly. I used to see some transparent black spots earlier. Even visited a hospital in Dubai but they did not find anything. Its when i visited after a few months to my home country Pakistan when my right eye got filled with blood. From that time, i have been seeing a doctor in Pakistan who is specialist in Vitreous and have done 1 laser surgery per year so far. After 2 years same started in left eye but less intense. I am a software engineer and all my work is based on computer. Everything was good , now last coupe of days back i had a bleed in my left eye, from which i can see properly. I am going to consult a specialist today to have a laser surgery or injections to heal the inflamation. I am based in Dubai and i have to move to Pakistan to make the treatment . I pray to Allah that everybody gets his vision back. Amen.

    • michele said,

      April 16, 2012 at 8:05 pm

      ask your doctor about using chemotherapy injections, they seem to help me, First they used Avastin, but now they have switched to Lucentis. Good luck!

      • Salman Ansari said,

        April 17, 2012 at 2:40 am

        Thanks for such a helpful suggestion. I visited the doctor last week, he also suggested me same point. He told me that i have to take some treatment used in cancer. But now i am clear what he was talking about. The doctor found out, there is some swelling on my retina which is having the inflamation. For the time being he suggested steriods ( predinisolone) of 60 mg per day. I have been taking it for a couple of days and started to feel better.

        Upon my next visit, i will consult doctor for same injections you suggested. Thanks for the suggestion.

      • michele said,

        April 17, 2012 at 3:37 pm

        you are welcome, the chemotherapy seals the leaking blood vessels. It hasn’t stopped the problem entirely for me, but it has helped!!! again, I wish you the best of luck, this is a real pain in the …….keep me posted if you want to !!

      • Salman Ansari said,

        April 18, 2012 at 1:23 am

        Sure michele, your advise is a great help to me. I ll keep you posted. Thanks buddy

  15. June 5, 2012 at 1:58 am

    Hi All, I am from INDIA. My Mom’s brother was facing this problem in 2006. Because of this disease, now he is facing ” Traverse mylitis”.

    Can any one help me, either by throwing some light how can we deal with this disease or by providing mail-id of some good doctors to whom i can consult.

    Please reply.

    Thank All

  16. Neil said,

    July 4, 2012 at 7:40 pm

    Hi people. I’m from the U.K I was diagnosed with eales disease last year in May 2011. Doctors in my city didn’t know much about it and what the cause was. I was given laser treatment and 6 months of Anti-TB treatment. Recently the bleeding re-occured and I had to have more laser surgery in March of this year. This disease is really scary as it’s hard to tell the outcome and my doctor doesn’t really know what’s going on as he’s never treated something like this before.

    My main problem which I have had since my eales disease is a constant severe pain in my eyes. It feels like a swelling inside the eye. I also get swelling around my eye at the temples and eyebrow. My eye also goes red at the corner. I have had to drop out of university as a result as I cannot read for long. Doctors have tried various pain killers but none really help.

    I’m finding it really hard to cope. I was wondering if anyone else on here has had a constant pain in there eyes and also has eales. Is there any treatement out there for it?

    Plus my vision in my left eye is not great.

    Thanks for reading.

    Neil.

    • lifejust4u said,

      July 5, 2012 at 11:40 am

      pl, contact Dr. Mahes P Shanmugam at Sankara Eye Hospital at Bangalore – India.
      http://www.sankaraeye.com

    • Neil said,

      July 9, 2012 at 6:06 pm

      Sorry I know I posted above. I’m just desperate would really appreciate any advice for the best treatment for eales disease and getting to the issue of my eye pain. Does anyone know of any eales disease doctors in the U.K? or India?

      Thanks
      Neil.

      • July 9, 2012 at 6:57 pm

        Ask you doctor if he has done any reserch on chemotherapy injections to the eye. I have had the laser, vitrectomies, and the LTBI treatment regime. I still have infrequent bleeds but not nearly as often since I started getting chemo injected into the eye. First they were using Avastin, now they are using Lucentis.,

      • Mary Harrington said,

        July 10, 2012 at 6:02 am

        Hi Neil
        I have had Eales disease for fouteen years now. I am from Massachusetts United States. I do have a good Doctor as I still after all these years still have sight. If you want info on Boston doctors let me know. I have been on a series of drops and I believe it helps the pain. I do not have constant pain but do get a swelling type pain sometimes, which nobody seems to understand, and sometimes I feel a little crazy because they cannot associate it with any real cause. But believe me it is very uncomfortable, it is interesting that you have pain also. I would like to compare as maybe it could lead to something as little seems to be known about this. Mine feels as if my eye is swollen up and is pushing out of the socket, which I know is realy not happening is is just a sensation.
        Wishing you well
        Mary

      • lifejust4u said,

        July 10, 2012 at 11:13 pm

        Dear Neil,
        Pl be careful before you take any medicines – which are not prescribed by retina specialist doctor. In my view you can contact doctor as suggested by some reader over here or I can assure you that compare to any part of the world Eales is very common in India & nearest sub-continent.
        Request you to log on http://www.sankaraeye.org and ask for Dr. Mahesh P Shanmugam @ Bangalore_India. He has cured (up to 80 %)lots of patients with Eales problem.
        Hope, given info will be useful to you. Wish you good luck – Get well Soon.
        Regards, LifeJust4U

      • mteksolution said,

        February 28, 2013 at 3:50 pm

        Dr. Jyotirmoy Biswas at Shankar Nethralaya chennai, India. That is the best Eye hospital in the world.

      • Mel said,

        April 13, 2013 at 10:07 am

        Hi Neil,

        I am from Dorset in the UK and I am currently being looked at at Bournemouth hospital by Mr Morris, he is fantastic and even though I’m not cured he has stil done anything and everything he can for me! I believe there is no cure for this horrible disease and stil 4 years into it I am stil suffering but also hoping one day it all might just disappear! I am really surprised of seeing how many people are actually suffering and it’s also quite comforting to see I’m not alone with this scary illness x if u would like to mail me u can get me on melnmas@hotmail.com x

        Mel x

  17. Mary Harrington said,

    July 10, 2012 at 6:07 am

    Hi Neil
    I should also mention cortizone and avastin injections alternating monthly have helped. I know Eales disease is in the Retina but my macular is now swolle as I have had an incredible amount of laser and vitrectomy’sn both eyes. Hang in there as I know it is hard to cope sometimes as this condition is not curable but treatment does and will help.
    Sincerely
    Mary

    • LJ Sotolongo said,

      June 10, 2016 at 4:32 pm

      Mary, my wife and I are Cubans and she is one of the two people diagnosed with that syndrome over there. Can you please provide us the information of the doctor you’ve mentioned in a previous comment? We are trying to find a doctor that really knows about this. Thank you in advance.

      • erareeve said,

        June 13, 2016 at 9:48 am

        Dr. Jiong Yan- Emory Eye Center Atlanta, GA Phone # 404-778-4182

  18. s kumar said,

    July 13, 2012 at 11:21 am

    I have eales disease from 2005
    Plz suggest me tteament

    • Salman said,

      August 25, 2014 at 2:41 am

      Dear Kumar,

      You should contact a ophthalmologist who will advice you what to do next. Your eye may require laser surgery, or avastin injection or you may need to take oral dose of steoriods. It depends on your inflamation, my suggestion to you will be to contact the eye specialist asap so the raptured vein should be sealed off quickly.

      I by myself is a sufferer of this disease since 2005 and now my both eyes are stable.

      Regards,
      Salman

  19. Neil said,

    July 21, 2012 at 6:27 pm

    Hi Mary

    Thanks for your reply I really appreciate it. The swelling type of pain you describe is exactly what I experience. It’s quite interesting that we both have similar symptoms. Is your’s worse in the morning and night? mine seems to be. It feels like my eye is really swollen inside and there is a pressure. I’ve seen various eye doctors but they do not know what causes the pain. Its really painful and can’t read most of the time because of it. When the pain is bad my eyesight seems to blur more as well. Its very strange. Does your eye get red as well?

    What series of drops do you take which help with the pain? Is there anything else you take to manage the pain?

    Mary could you also send me the contact info

    Just want to say thanks to lifejust4u, Michele Redford.

    I have a quick question for Michele Redford what do you mean by LTBI treatement?

    Thanks
    Neil.

    • Mary Harrington said,

      July 21, 2012 at 7:25 pm

      Hi Neil I am not sure where you are located but I live in Massachusetts and have great doctors.. The pain from the swelling feeling nobody has given me anything for as they don’t seem to understand it or see any type of swelling but I can assure you it is there. I use prednisone drops twice a day also alphagam and Bromday. As well as the eye injections.
      I can send you my number on a private email if you are interested It helps to know that we are not crazy with some of these symptoms.
      Mary
      allcapewell@comcast.net

      • Neil said,

        July 23, 2012 at 6:30 pm

        Hi Mary

        I tried steroid eye drops and they did help a little with the pain. They reduced it and also made me see better. However I could only take them for a short time as the doctor said the side effects from using the drops long term would cause cataracs. I’ve never tried the alphagam and Bromday ones? what type of drops are they? are they ok to use long term?

        Yeah my pain symptoms in the eye feel very real but doctors can’t see any inflammation. I wonder what this pain is caused by? Have you been tested for autoimmune conditions?

        Have you tried any oral steroid treatment? I tried some for 6 weeks at 30mg they helped a bit with the pain. A doctor I seen in London said I should have been given 60mg to try which might have helped better. Doctors can’t prescribe anymore cause there worried about the side effects. Also I’ve read about immuno suppresant drugs like methotrexate. Have you tried them before? I wonder if they would put the pain in remission.

        It’s all one big mystery. I’m determined to get rid of this pain! it’s driving me nuts and really prevents me from reading even If i have to see a doctor in India. I know there is something very wrong.

        I will email you soon and you can reply and send your private number which would be very helpful thanks

        Neil.

      • Salman Ansari said,

        July 24, 2012 at 1:22 am

        Dear Neil,
        I suggest that if you go to India you might find very good treatment on this disease. As per my study its more common in Asian region mostly in India, Pakistan and nearby countries. So, the doctors there are well aware of it and have better treatment plans. Even i am continuing my treatment here in United Arab Emirates with one Indian doctor and so far i am feeling much better than earlier. Hope it helps.

  20. Neil said,

    July 25, 2012 at 6:12 am

    Hi Salman

    thanks for your advice.yeah it’s more common in India so doctors have more experience with it. what type of treatment did you get? I have had laser surgery twice but it hasn’t helped as far as the pain.

  21. Neil said,

    July 26, 2012 at 4:46 pm

    Hi Mary how are you? I sent you an email from neil175@hotmail.com was wondering if you could send me the details of this doctor in Boston you know.

    Thanks
    Neil.

  22. sunracesuraj said,

    July 29, 2012 at 12:13 pm

    I had bleeding in right eye almost after 3 year of taking Lucentis injection. I am back to same stuff of checkup, steroids, wait and pray game…
    http://www.orkut.co.in/Main#Community?cmm=45229738

  23. dekel said,

    August 4, 2012 at 2:28 am

    hi
    im 28 years old women from israel, i was diagnosed two months ago with what look to the doctors here as eales disease, they never saw something like that before, and they still not sure its eales, its pretty depressing, my father is a jewish-indian by the way. all my blood tests, Imaging tests… etc came out just fine.
    first i was in hyperbaric chamber because they thoght of central retinal artery ocllusion. after a few days ive developed vasculitis in my right eye, then they saw it started also in left eye. then gave me injection to my right eye which realy make things better.
    im still getting prednisone PO (almost two months)
    is there anyone from israel here?

    • Dor said,

      December 15, 2012 at 12:35 am

      Dekel shalom,

      Where are you getting treatment for your eyes?
      Best regards,
      Dor

      • Mary H said,

        January 5, 2013 at 7:36 am

        mercsi dr Stephen h. Foster in Cambridge Massachusetts. He is using cutting edge technology and has many other doctors from all over the world training under him. I have gone from 20/80 to 20/20, I have bi-weekly cytoxin infusions I hope this helps. I know it is scary and frustrating I was diagnosed 14 years ago
        Mary

      • Dor said,

        January 6, 2013 at 1:46 am

        Dear Mary,

        I sent you an e-mail but I am not sure if the address was yours. If you did not get it,, please send me to dor.mussel@galtronics.com

        Thanks,
        Dor

  24. Neil said,

    August 5, 2012 at 7:41 pm

    Hi Dekel nice to meet you. I’ve had eales disease for a year and half now doctors can’t find any other diagnosis and all the blood tests come out fine. Do you get any pain in the eye? that is the worst part for me. its really difficult to cope with. Do you find that the prednisone helps? my doctors won’t prescribe it because of the bad side effects. I wish they would give me something as its not getting any better.

    • dekel said,

      August 8, 2012 at 1:27 pm

      hi neil sorry to hear you dont feel good. i dont have any pain. the prednisone does help. but i suppose to finish this therapy in 2 weeks. hope everything will be OK. i have to check blood pressure and blood Glucose. i also got realy fat and Swollen because of that…. anyway you cant get steroids forever- it has bad side effects as you said… only in flare up times….
      by the way anyone know who is the best eales expert? worldwide?
      thanks.

  25. Neil said,

    August 6, 2012 at 7:44 pm

    Sorry for posting again. I’m so scared my vision has been really bad lately. The pain inside my eye is unbearable it just makes me so desperate I don’t want to go on like this anymore. My opthamologist says he can’t do anymore for me. I don’t know what to do. My face feels swollen as well as my eyebrows. Does anyone know any good doctors in the U.K?

  26. September 21, 2012 at 12:27 pm

    Third bleed this year, there is a new chemotherapy drug out now called Eylea, FDA approved specifically for the eye, most commonly for the treatment of wet macular degeneration. Got the injection yesterday, This is supposed to be longer lasting than the Avastin and Lucentis. Will see. I hope!! (No pun intended).

    • lifejust4u said,

      September 28, 2012 at 7:27 am

      Its all about “trial & error”…! Very few doctors and pharmaceuticals companies are interested for drug research on this type of RARE disease. However, we will pray to GOD to save our life..! Good Luck to all..!

    • bmmusic2012 said,

      January 3, 2013 at 8:45 pm

      I think we should organise an eales disease only party:)

    • Bianca said,

      April 27, 2017 at 1:12 pm

      Did this work for you? I just got an injection yesterday…..

      • Timothy Langenback said,

        April 30, 2017 at 1:29 pm

        Bianca, very best of luck. Hope all works out well. Tim Langenback

  27. Neil said,

    December 15, 2012 at 9:49 pm

    hi not heard from anyone on here recently. I’m still getting really bad eye a pain, the eye doctor said my inflammation and eales looked fine.

    I don’t understand why I get blurry vision and constant severe pain. Is anyone else in the same boat? if so what did they do?

    • Dor said,

      December 16, 2012 at 1:32 am

      Hi there,

      From my experience pain somewhere beihnd the eyes, or pain on the left temple, is common. In most cases it is correlated with some activity in my eyes – inflamation in the retina, leak, floaters, etc. As all physicians cannot connect the pain to any specific cause, they mostly ignor it. I refer to it as Red Flag. Whenevr I get such pain I increase the frequency of the steroids drops I have, and try to rest.

      • Neil said,

        February 23, 2013 at 4:06 pm

        Hi Dor,

        The problem is I get severe pain constantly its little worse at night maybe because I can’t distract myself from anything else. I get really worried about it as I know it must be warning sign something is seriously wrong with my eyes. I’ve seen various doctors and they all say the same thing that there is no inflammation and the only thing they can diagnose is eales disease. I’ve had two laser surgeries before. My sight is variable and can blur out quite badly on some days.

        Neil

    • bmmusic2012 said,

      January 3, 2013 at 8:38 pm

      Hi all. I’m a 31 yr old man in ireland and was diagnosed with eales disease in 1992, I developed blurred vision in my left eye and to doctors amazement it cleared only to return in my right eye, I underwent laser surgery x 2 and retinal surgery in my right eye x3. I have since lost all sight in my right eye and have good vision with contacts ( although many floaters ) in my left. My eye is cosmetically damaged from the operations and although I live a ‘normal’ life , it would be nice to hear from people of the same diagnosis. I was told its one in a million worldwide , a title I enjoyed as a kid, but in the last few years I seem to have developed a complex in social situations regarding the appearance of my eyes which is a bummer, but people are curious I suppose. Would love to hear from others ! bmmusic@mail.com

    • bmmusic2012 said,

      January 3, 2013 at 8:39 pm

      Hi all. I’m a 31 yr old man in ireland and was diagnosed with eales disease in 1992, I developed blurred vision in my left eye and to doctors amazement it cleared only to return in my right eye, I underwent laser surgery x 2 and retinal surgery in my right eye x3. I have since lost all sight in my right eye and have good vision with contacts ( although many floaters ) in my left. My eye is cosmetically damaged from the operations and although I live a ‘normal’ life , it would be nice to hear from people of the same diagnosis. I was told its one in a million worldwide , a title I enjoyed as a kid, but in the last few years I seem to have developed a complex in social situations regarding the appearance of my eyes which is a bummer, but people are curious I suppose. Would love to hear from others ! bmmusic@mail.com

      • bmmusic2012 said,

        January 3, 2013 at 8:42 pm

        Btw, I’ve no pain, just slight discomfort, never heard of the meds above I was on steroid tablets and fml drops, but no hospital care or meds in the past 14 yrs or so

      • erareeve said,

        January 4, 2013 at 10:17 am

        If it is one in a million, that means there are almost 7000 people like us out there. I have fear that it will show up in my other eye at some point, but I am lucky enough to have no cosmetic damage. Since my surgery, bright light is very painful, and I find myself closing one eye often, even with sunglasses.

      • Prabin acharya said,

        August 2, 2014 at 9:50 pm

        I am suffering from same disease since 1 month and m seeing lots of floaters.plz mail me i need ur experience.suprab45@gmail.com

      • Tim Langenback said,

        August 25, 2014 at 9:42 am

        Prabin, stay close with your ophthalmologist. Floaters are normal as long as they don’t become too prevalent thyat they interrupt your vision. Vision stasbility is the key and if any leakage continues, you may need some additional laser. Good luck!

        Tim

  28. Dor said,

    January 4, 2013 at 11:05 pm

    Hello there,

    You are lucky enough, being able to read and use computer. Enjoy the half full cup.

    I have similar discompfrt, as my eyes are very sensitive to light and it is on-going struggle to adjust to the light in any given situation. Anywhere I go including at home I use dark glasses and hat. My office is darkened continuously with curtains, and when I meet people I try to light the room by opening the curtains, whiile using sunglasses myself. Recently I bought a 3rd set of sunglasses with 90% light block to use in sunny days or snow. I frequently change the glasses according the situaiton.

    What is the reason for this sensitivity? Probably the root cause is related to damage to the retina cells. In my case though, the pupils are fully open permamently, due to damage to the cliliary muscles, unable them to adjust the light entering th eeyes.

    My advise – find a good doctor and do frequent checkups. You have many years to live and all you can expect is deterioration of your good eye. Try to slow the process by good care.

    Take care.

  29. Jennifer Roper said,

    January 11, 2013 at 10:47 pm

    My daughter is 12 she was diagnosed with eales. She has had one laser surgery and 4 vitrectomy’s. It is January 2013.. She was only diagnosed in September. Are your cases as bad or is this how eales is.

    • Jennifer Roper said,

      January 11, 2013 at 10:59 pm

      She has had numerous vitreous hemorrhages and now we cannot get the retina to stay attached. She had to have an emergency surgery to remove her lens and now she has to be facedown for a week or two. We live in Michigan and supposedly she is only the second case in Michigan. We. Are new to this disease but it is so rapid in my daughter we can’t even breathe.

      • Mary H said,

        January 13, 2013 at 6:43 pm

        Please contact me as I have been diagnosed with Eales disease but more so I have two young daughters and I feel my experience with this disease might help you. I see doctor Stephen H Foster at Mersi in Cambridge Ma associated with mass eye and ear. I have had multiple surgeries and painfull eye injections from many well known specialists it is only now after going to Dr Foster I see an end to the tunnel as he is treating me systemically not just the eyes. it is worth the trip Boston they see people from all over the world. For the first time in years I have 20/15 vision. Do not waste time and more importantly sight see someone who’s specializes in retina disease. Your daughter is way to young to go through this my heart goes to her and you.
        Mary Harrington
        508-896-8690

      • varsha patil said,

        January 1, 2015 at 10:43 am

        in 2008 my nepnew is dignosis with eales desease subsequently we underwent 6 treatement sessions including cold lesser and we continued treatment here in india mumbai
        in year 2010 one of my friend suggested to also look for aayurvedic treatment simultanously while researching on internet i come accross swami ramdevbaba web where in stated that a pranayam named as KAPALBHATi cleans all obstacal in our blood vessels(64000000 nadis exactly) we tried it for nearle a year and upto date ie 1/1/2015 we have not visited our doctor i dont know if it helps
        also i heard that termeric and spinatch in diat is helpful
        god bless us all

      • mteksolution said,

        January 2, 2015 at 8:23 am

        That does not help at all as the cause of this disease is not clear. See Dr. Jyotirmoy biswas at Sankara Nethralaya, in Chennai.

  30. Dor said,

    January 13, 2013 at 6:54 pm

    Dear Mary,

    Can you send me your personal mail address – I would lik eto ask your help with regards to make an appointment with Stephen H Foster .
    Please kindly reply to me by dor.mussel@galtronics.com

    Thank you so much.
    Dor

  31. lifejust4u said,

    January 22, 2013 at 5:48 am

    Dear Friends, its really good to read all notes from different age group. Please keep updating to everyone and do not loose patience. Hope, everything will fine one day..! I think we should create a common “Eales disease Email group” – So, everyone get a message without failure. In addition, we need to gather data on each and every individual – what they’re feeling i.e. past/present etc. Please comment…

  32. Neil said,

    February 23, 2013 at 4:15 pm

    Hi Mary H,

    I’ve been suffering with eales disease for the last two years, It’s really bad just now. there isn’t much my doctor can do except monitor my eyes.

    I have had two laser surgeries to seal the blood vessels. The worst part of it is the eye pain and facial pain I experience. my eye sight also blurs quite badly.

    I have heard of stephen foster before. I was wondering if you could send me more information on how he treated you. My email address is neil175@hotmail.com I would love to just get some relief from the disabling pain.

    thanks for reading.

    Neil.

  33. lifejust4u said,

    March 1, 2013 at 12:35 am

    Dear Friends,
    Pl, read following link article – Hope, You may find it useful…!

    http://www.joii-journal.com/content/3/1/11

  34. Vi said,

    July 15, 2013 at 3:47 am

    Hi there

    I have suffered of Eales Disease since Jan 2013. I had dye injected to my body to see from the back of my eye ball. Also I had laser after that which was really painful. I wish not to have it anymore. Then I had to do Lumbar Puncture which they couldn’t find anything from there which kinda make me confused of what causing it really. And the answer that I got from my specialist was UNKNOWN. I am treated as a Tuberculosis patient because I was born in Indonesia and they asked me to be on treatment for 6 months by consuming Isoniazid and pyrdoxine. Since I don’t have TB from my Lumbar puncture result, the Doctor just told me the reason why is because to prevent the TB. To be honest I really hate those tablets. They make me feel dizzy all the time. Also my question is would I be able to see back in normal vision though? I tried to google of what the people who have suffered the same kinda disease of me which called Eales and I couldn’t really find the final result of their vision now. I am just concerned about my vision for now and future. Thank you and I hope you will be able to help me with that.

    • Salman Ansari said,

      May 7, 2014 at 5:34 am

      Just realize that i would be there with you always. May be you wont get an active bleeding ever or you might get it some time. So, you should be mentally prepared. I am an Eales disease patient for last 10 years, first 3-4 years it was tough but now its stable.

      I suggest that you pay attention to your general health, quit smoking if you do and opt for a healthy life style. Try not to lift more weight. I hope everything will go fine.

  35. Shirley said,

    August 30, 2013 at 8:21 pm

    I’m 24 yrs old and I was diagnosed with Eals whe I was 7yrs old (somewhere around ’96). When I was diagnosed I had already lost my sight in my left aye and was about to lose my right eye. Some Dr. Babsar (spelling) at UCLA immediately arranged surgery to save my right eye, from retina detachment (I apologize for not remembering specifically but as you can see its been aroun 17yrs since this). a couple months later he did surgery on my left eye and I was able to see again, although not perfect vision.

    The disease was pretty stable until I was 12yrs old, once again I lost sight due to hemorrhages this time from both eyes. By this time I had moved to San Diego and Dr Smith at Scrpps Mercy Hospital did another surgery to clean up the hemorrhages. In addition, several months later he did laser surgery a couple more times.

    Today my vision is 20/400 on my left eye and 20/200 on my right eye. With corrective lenses I am able to have 20/30 combined vision, I am free to move around and drive. The only problem is my night and side vision is pretty bad. But I am very grateful I still am able to see. Of course, since this is a progressive disease, it is likely that any day I can lose my vision again, but until then I try to appreciate everything the most I can.

    I just wanted to share my story to those of you with doubts, although everyone is different, there is hope.

  36. Rick C said,

    May 5, 2014 at 3:20 pm

    I was diangnosted in 1985/85 with eales, I was 14/15 years old at the time. The ER thought I had a detatched retna, but in actuallity my eye was full of blood from blood vessels exploding. I ended up seeing Dr Manassee in Erie, PA who preformed laser surgery, I have neevr had another issue.

  37. javed iqbal said,

    June 1, 2014 at 9:41 pm

    Hello,
    I am 33 years old, serving in pak army. I was diagnosed with eales disease in Aug 2007, frist time my right eye bleeded badly then I reported to military hospital where they investigated very rapidly and treated by laser doing 360 degree PRP and by oral prednisolan tablet. Still my eye quite well having excellent vision. Please

  38. Rahul India said,

    June 22, 2014 at 6:28 am

    Hi All,

    I am 38 Yr. old from India. Thanks to all for your valuable posts.
    I have gone through all these experience of bleeding in the eye, laser, Avestin injection and victronomy surgery for my one eye twice.
    Am suffering from same since 12 yrs now. But able to maintain the disease though routine check up. I must say Ayurvedic treatment helped me a lot in maintaining my disease. It wont cure the disease, but make your eye preventive from further deterioration.
    Also I am taking few medicine to maintain my disease, those are general eye antioxident and Special trifala (an ayurvedic medicine).
    Though I have been to renowned Indian eye hospital like Sankara Netralaya in channai, LV prasad eye institute at hydrabad and Aditya Jyot eye Hospital at Mumbai. Haven’t come across any doctor who can cure it fully. You can only manage the disease.

    Thanks All.

    • Tim Langenback said,

      August 25, 2014 at 9:45 am

      Rahul, yes management of the disease for now is the best we can hope for. I have managed my Eales for over 40 years so it can stabilize. Maybe research in the future will hold some new options. Keep the faith.

      Tim

    • Prabin Acharya said,

      September 4, 2014 at 10:24 pm

      hello bro i am 22 year guy from nepal.i have been suffering from same disease since 2 month and i have been bleeded twice. i would be so thankful if you would tell me more about the ayurvedic treatment.
      suprab45@gmail.com

  39. Tim Langenback said,

    August 22, 2014 at 4:45 pm

    Tim L in Florida
    Hello everyone! I stumbled across this site and took the opportunity to read all of the entries and comments. My thoughts and prayers go out to you all. Keep the faith. I guarantee you that from the level of research going on around the world, much will be learned about Eales Disease leading to better treatments and maybe even a means of restoring lost sight.
    If you all will indulge me, please allow me to tell you about my story concerning Eales. In the spring of 1972, I was sitting at my desk, just after lunch, at a large insurance company office in Philadelphia, PA and began to experience a yellowish ball of liquid floating in my right eye. I left the job early; traveled back to my central Pennsylvania home and visited my normal ophthalmologist the next morning. After an exam, he confirmed that I was having bleeding in my right eye. He then referred me to an ophthalmologist surgeon friend of his at Wills Eye Hospital in Philadelphia.
    Two days later, I traveled to Wills Eye Hospital and met my new doctor. He began to run a number of blood tests on me and a florescence angiogram to have a complete set of pictures of my retina. After consultation with a number of other doctors, he ruled out all diseases except one, Eales Disease. I was then introduced to Dr. Larry Magargal. Dr. Magargal had been spending some years studying the disease and at that time, early 1970’s, was considered a world expert on the disease. He began my treatments in the right eye (I believe five) but also indicated some early symptoms in my left eye necessitating about three treatments to seal off leaking blood vessels.
    I needed some subsequent treatments in both eyes around 1976-77. Things then stabilized but vision had been affected by the many laser treatments. Remember, in 1972—76, laser equipment was very new and only rarely used by experts in the field of ophthalmology. My right eye vision was about 20/90 corrected and my left eye fell slightly to 20/40. In the many years since, I’ve been seen regularly by ophthalmologists who take an interest in my case. Up until 2003, you could not find much information about Eales Disease on the internet. I am excited to see so much research currently in progress.
    I cannot say enough about Wills Eye Hospital in Philadelphia. They have a relatively new facility and are world renowned in their work. Please everyone, feel free to look them up on the internet and contact them.
    I would be happy to communicate with anyone via e-mail if I can help answer any questions. My e-mail is tlangenb@tampabay.rr.com. Good luck to all.

  40. Puri said,

    December 29, 2014 at 8:30 pm

    hi, i’m from Indonesia, male 24 years.

    i was diagnosed with Eales disease about 1 months ago, November 2014. i went to hospital because there are many floaters in my eyes. then, the doctor told me that there is a blood in my eyes, especially the right eye. My doctor already took some actions such as avastin injection and laser to me.

    but, i still do not believe that i am suffering an eales disease. as far as i know, eales disease related to vasculitis. Vasculitis is considered an autoimmune disease.
    whether the blood test can diagnose eales disease?
    thank you

    • December 30, 2014 at 9:42 am

      Why do you disbelieve. There is neurovasculitis in your eye and it affects both eyes. Blood test cannot diagnose eales disease. It is not a blinding disease but very treatable disease. I have it since 1992.

    • erareeve said,

      December 30, 2014 at 9:55 am

      It is my understanding Eale’s disease is idiopathic. i.e. it is a diagnosis of exclusion. The cause of neo-vascularization in your eye can be caused by many issues including but not limited to, diabetes, sickle cell, sarcoidosis, etc. It is my understanding that these issues should be ruled out before a diagnosis of Eale’s disease can be made. However, that is how it was explained to me here in the United States. The experts of Eale’s disease, or the professionals who deal with it the most are closer to your side of the world in India. I have not had much luck in locating information that is useful to those who are experiencing this disease. Most of the information that is available is geared toward medical professionals. Google away, and if you find anything you feel will be useful to you please post it here.

      See: http://www.aao.org/theeyeshaveit/optic-fundus/retinal-neovascularization.cfm

      • December 30, 2014 at 10:27 am

        Yes you are right, but did you test positive for the diseases that you mention? If not then do you have it in both eyes? If yes then it is Eales. Don’t waste time for getting treatment.

  41. erareeve said,

    December 30, 2014 at 10:44 am

    I went through a battery of tests and all were confirmed negative. It currently only effects my left eye. I am under a retinal specialist’s supervision. I have been told it will most likely effect my other eye and we can handle it once I start to show signs. I had a vitrectomy in my left eye several years ago, and have been told if we catch it soon enough in my right eye that that treatment can be avoided.

    • December 30, 2014 at 10:55 am

      Good Luck. Also do a PPD test for tuberculosis hidden or dormant.
      Since this is a very rare disease there are no specialists but since it happens more in India, eye doctors specially in Sankara Nethralaya in Chennai, are very well trained in it’s diagnosis and treatment.

  42. Dave said,

    April 6, 2015 at 4:44 am

    Hi, this is spring 2015. I got this too. Don’t know wheter to go for laser or ayurveda. How did you do? Floaters gone? If yes then how many days after the treatment?

  43. Crissy Huberts said,

    April 13, 2015 at 2:10 pm

    Hi there,

    After about 9 years I have found a website that contains information about my ´Eye disease´ Eales! It´s a miracle! In 2006, I was 12 years old, the disease has been esthablished. In ONE WEEK my vision in my right eye changed from 100% to 20%. At the same time my left eye started as well.

    As in the Netherlands the disease is so rare and according to the doctors, there was no one else who was treated for this disease in the Netherlands. They didn´t know what to do or what the source was. Than they decided to laser the veins who were leaking to stop it from bleeding. I was treated from 2006 till 2010 I throught. I don´t know how often they have lasered me exactly, must be about 6 times in the right and 3 times in the left…

    Till today they haven´t found a source or reason…As I said before, this is the first personal research, as I thought there was no further conclusion or information. Also the academic terms in English are giving me not a lot of information. I am sorry for the vage answers.

    I am still concerned and confused as I don´t know where the disease is coming from. Besides why it happend so suddenly.

    I have never had another treatment besides laser treatment…Therefore and by reading all these stories I am very curious if there could be a possibilty of other treatments or reasons etc. to help me??…The academic hospital of Maastricht treats me. Nowadays they check me once a year. Till now everything is steady, But I am still afraid of more bleedings as there is no source or further research in the Netherlands.

    Any reply or response to this email will be a blessing!

    Thank you so much

    Crissy Huberts
    Netherlands
    25 years old
    Female
    Tinted skin / brown haird/ light green eyes
    100% Dutch

    • erareeve said,

      April 16, 2015 at 3:30 pm

      Crissy- I understand your concerns. The disease as I have been told is idiopathic. I have a check up annually but am concerned by the cause as well. There is no research in the USA that I know of. The best resources for information seem to come from India, where it is more common.

    • mteksolution said,

      April 16, 2015 at 4:01 pm

      Don’t worry eagles may distort your vision but it is not a blinding disease. It is a very common disease in India

    • Dor Mussel said,

      April 17, 2015 at 1:28 am

      Hello Crissy,

      Try one of the two well-known medical centers worldwide for retina (Eales Disease included) one in Boston (USA) and one in London (UK):

      London Eye Hospital, 4 Harley Street, London, W1G 9PB, UK
      Patient Department

      Local: 0808 274 1522
      Fax: 0044 207 060 2601
      Overseas: 0044 207 060 2602

      Email: info@londoneyehospital.com

      Boston:
      New England Eye Center/Tufts Medical Center
      800 Washington Street, #450
      Boston, MA 02111
      617-636-4677
      617-636-4215 (Fax)
      sdunn@tuftsmedicalcenter.org

      Take car,

      Dor Mussel

      • Jaideep Nandy said,

        April 20, 2015 at 9:08 am

        Sorry the best for Eales disease hospital is in India: Google Sankara Nethralaya, chennai

    • Tim Langenback said,

      April 30, 2015 at 7:04 pm

      Crissy, good evening! You can read my story on the site. I was first diagnosed with Eales in the early 1970’s in Philadelphia. I recommend Wills Eye Hospital in Philadelphia, PA USA if you are interested. They have done some very good research on the disease. You can look at their web site for more information.

      Also, if you Google Eales Disease, you will find some research being done at one of the Texas (USA) university hospitals. Keep the faith. Help is coming.

      Good luck!

      Tim in Clearwater, FL USA

      • Dom said,

        March 25, 2016 at 2:54 am

        Hello I see my doctor for Eales Disease in Texas and yes it is a hospital where they do research and is a school as well. I was just diagnosed September 2015. If anyone is still around on here in the United States please contact me @ eales_15@yahoo.com thanks

      • Kat Chavez said,

        June 13, 2016 at 12:22 pm

        I have Eales…since 1986. I’m in NM…Chavezkatharine@gmail.com….email me.

      • Mary Harrington said,

        June 13, 2016 at 8:06 pm

        I was diagnosed in 1998 I live in Massachusetts I have the best Doctors in the world here at Mersi. They have totally not only rescued my eyes but I have 20/20 in the left and 20/25 in the right. I have a retosert implant which has saved me from injections and was treated both chemo. Feel free to contact me for any info. 508-246-6646

        Mary H

  44. Dor Mussel said,

    April 20, 2015 at 9:21 am

    My dear mteksolution,

    Who am I to judge?

    Anyway – all I can do is forward recommendations and support based on my own experience whoever is suffering from similar problems.

    All the best,
    Dor

    • ALLCAPEWELL@comcast.net said,

      April 20, 2015 at 9:37 am

      My name Mary Harrington I was diagnosed with easls disease 16 years ago.  Although I still receive treatment once a month I still have relatively good sight and can drive , work, and still enjoy many sports and activates of daily life.  After many doctors painful procedures and relapses I feel I have found the best Doctor possible.  He did not just treat my eyes but my entire body.  I was on a Chemo drug for about a year. Not just Avastin in the eye but Cytoxin  via IV.  I am happy to say I am doing the best I have been in Sixteen year.  I will be 51 in July and my sight is amazing for all I’ve been through . I highly recommend Dr. Stephen Foster at Merci in Cambridge Ma.   I.

  45. April 21, 2015 at 12:01 pm

    Hello Everyone,

    My story is less than one month old. I have been a healthy male who has enjoyed 33 years of life without any major illnesses. In the beginning of April 2015 I began to see black floaters in my left eye, thinking that it must be time for me to wear spectacles I visited a renowned hospital network – VASAN EYE CARE and met a Jr. doctor who mentioned that their has been a hemorrhage in my left eye and right eye too has symptoms. I did not know the name of my disease yet.

    I got laser treated a couple of days after by their Sr. Doctor (Retina Specialist) who mentioned that in my case it was an emergency as the bleeding could increase further and right eye too was at risk.

    Something he too could not understand the reason for was the fact that I had blurred vision after my laser surgery. It has been almost a week and he advised me to wait as the muscles in my eyes would have gone in spasm due to pain and stress caused by laser treatment.

    I have finally given up today and requested him for allowing me spectacles. I have a cylindrical number of -1.25 and +2.0 in my left and right eyes respectively. I had a 6/6 vision prior to my surgery.

    I hope, as he says my vision recovers its accuracy and I don’t have to use glasses anymore, and I also hope unlike other stories I’ve read – I don’t require multiple surgeries as I’ve already noticed blind spots (about 5% of my vision lost) in my peripheral sight (not that major though).

    I have not named my doctors because I don’t feel they have any reason to be blamed for my situation, and my current situation is not that great. I might come here to tell you my success story accrediting them.

    Thanks for reading!`

  46. prabin acharya said,

    May 5, 2015 at 4:23 am

    my left eye have bleed 5 times in 9 month and now it is stable sinc 2 month.but as per doctor my right eye hav got a fresh bleed.but i am not seeing any spot or floaters but i am seeing blurred vision..guys need suggestion…and any info about shankar netralaya or patient of shankar netralaya chennai..plz mail me
    suprab45@gmail.com

  47. Jigar said,

    July 18, 2015 at 5:57 pm

    Hi All,
    Good to see a place where people can share their exp.
    I am a 33 year old male from India. I was diagnosed with Eales disease in early 2010 in my Left eye.
    Post detection I was treated with Avastin & 3 Lasers in my left eye in 2010. I had a constant vision for next 2 years. And not to forget, my Right was fine with no symptoms of Floaters.
    Then in 2012 there was more bleeding again in left eye & 2 Laser sittings were done. Everytime the floaters used get absorbed & only left with some in the top left corner.
    Since then I was having a constant vision till recently.
    Just a month back my Left eye again ruptured. Currently am in US & visited a Retina specialist here. He mentioned that this time it does not seem that the vein has ruptured but the GEL is pulling away from Retina.
    As the bleeding was more this time, he suggested me to wait for a month for detailed investigation.
    My Right eye is still healthy & fine – Touch wood.

    I just want to share my experience here & its really touching to read the experiences shared by people here.

    I have a query if anyone can suggest: This time, the floaters have not got absorbed & seems to be moving around a bit – Is this the initial sign of Retinal Detachment ?

    Thanks,
    Jigar

    • Dor Mussel said,

      July 20, 2015 at 5:04 am

      Hello Jigar,

      Floaters may be caused from several reasons and not always connected with the retina. Do not worry too much about that. Just ensure that your doctor is informed of any changes you experience and trust him to treat you as needed.

      Best regards,
      Dor

      • Jigar said,

        July 20, 2015 at 9:35 am

        Hi Dor,
        Thanks for your response.
        I do agree that we need to trust our doctor & should keep him/her informed of any changes.

        Just wanted to add some points here based on my exp only:

        1 -> Vitamin C supplement:
        I was also suggested by India doctor to take Vitamin C supplement in 2012. This does not have any side-effects & is good for the eye. I had started taking this in 2012 but had stopped when I arrived in US in Feb-2014. Till recent bleeding, things were stable. So not sure if me stopping the Vitamin C supplement aggravated the condition for recent bleeding. But I have now restarted the Vitamin C supplement again.

        2 -> Weight:
        As someone has already stated here, I was also suggested by Indian doctor to avoid lifting weights especially when you have fresh bleeding till things settle down. I say this since just 3 days before my current bleeding, I had lifted 4 bags of 23kg (42Lb) as my parents were going back to India after a US visit. Though I had lifted many bags of same weight when I arrived in US as well as when my Parents arrived here & there was no bleeding at that time. But not sure if all this over a period of time aggravated the things & led to the current bleeding. Till 2014, I was very particular to avoid lifting weights.

        3 -> Pillow:
        My Indian Doctor also suggested on fresh bleeding to use 2-3 pillows while sleeping. This helps to keep the head in the upright position & in turn helps the body to absorb the blood.

        4 -> No Bend down:
        At all times, avoid a sudden bending down which will result in the head pointing towards ground. This will lead to a sudden blood flow to the head & eventually to the eye. This **may** aggravate the condition. In case if it is needed, bend down very slowly. This too is suggested by the Indian doctor.

        Basically, I think we should just be cautious to avoid activities which may aggravate the condition & live a smarter life.

        Above points are just my observation based on my experience and I am not a doctor to professionally advise things.
        Just sharing my experience if at all it helps anyone even 1%.
        I have again started taking Supplement & avoid lifting weights.

        All the Best.

        Thanks,
        Jigar

      • Salman said,

        July 21, 2015 at 2:38 am

        I do agree with the precautions to be taken. Specially lifting heavy weight should be avoided as much as possible . Although doctors recommend to take care of these when you have active bleeding . But I myself is taking care since 2005 when I was diagnosed eales disease.

        Salman

  48. sudheer said,

    July 28, 2015 at 5:54 am

    hi guys, i m 38 yrs old and have eales disease in my both eyes since my childhood and i lost my vision in right eye due to retinal detachment and having 50% vision in my left eye. i have visited many specialists and had surgery in my right eye for hyper catract.

    Plz do follow the instructions carefully, if u find and similarities in the following simptoms and i have a solution to stop the bleeding.

    1. Plz observe if bleeding happens if you take the following nuts like Peanut, Almonds, Chasew nut, Coconut powder,
    2. Plz observe that foods like Brinjal and gingilly oil can also cause more bleeding.

    If u observe any kind of blisters in ur head or hair. Plz avoid these and if accidentally if u take them u have a to take the 10 to 15 grms of cummin seeds with equal amount of sugar added to it. You have to chew, for some time instead of directly eating. this cann be repeated for 5-7 days. This will reduce the blisters in ur hair. If u can buy the product from ur country try this for fast cure http://ayuraarogyam.com/index.php?main_page=product_info&cPath=88_25&products_id=168. I am not promoting this product.

    I have no idea what is the connection between the blisters in the head to the beeding but i found on observing for years of my problem, i found when ever i consume any of the products i have bleeding in my eys in very next few days mostly 2-3 days. I found Peanuts and almonds caused more damage to my eys . As i have trying to confirm the reaction sof the foods , i lost my right but i am able to keep the disease in control now.

    Plz try the above ,100% u will find betterment. Plz post your experiences on my mail id sudheer.myhome@gmail.com.

  49. Katharine chavez said,

    January 12, 2016 at 9:10 pm

    Hi I’m Katharine. When I was diagnosed with eales disease when I was 13..I was one of four in the nation with Eales disease (or that’s what I was rold) it has been a crazy life as I’m sure you know…but I would love to get information from you and just have a circle of support for this rare condition. I am 41 years old now and have vision in one eye…but currently the retina is separating (detaching)…please email me I would love to hear from you.
    Singnkat@yahoo.com. ..KC

  50. Gaurav eales patient said,

    October 13, 2016 at 8:06 pm

    Hello everyone, I was diagnosed with eales disease in january 2016 this year, I am a teacher, one day I was taking a class and all of a sudden I noticed 2 drops of blood obstructing my vision.I panicked and ran to the nearest ophthalmologist. He was an experienced doctor in South extension, Delhi and he told me I have had blood in my eyes. He did angiography and other tests and then told me I have eales disease. Before starting medicines I got a tuberculosis tests and then I was put on prednisolone 60 mg for 1 month gradually tapering. My vision improved and in march I was able to see everything perfectly in my right eye in which I had eales. One day there was profuse bleeding in my right eye and I rushed to the doctor. He told me that I had a vitreous haemorrhage and these are floaters. He told me that he will wait and watch for next 15 days and the blood will be absorbed by the body automatically. For next 5 months I was on steroids tapering doses, vasculitis disappeared but bleeds were recurrent. So after few weeks or days as the vision used to get clear there were again rebleeds. Till august this went on and I was frustrated living life with one eye. I changed my doctor and took a second opinion from a very experienced doctor from AIIMS Delhi who is now at Shah Satnam Hospital in Sirsa,Haryana.He told me that he has seen hundreds of cases in Eales and one mistake which most doctors do is that they put patient on steroids as a treatment. He said steroids are not a treatment but a temporary resort to arrest vasculitis and that he prefers to give a very heavy dose of steroids for just 4-7 days and then as the inflammation settles he does laser photocoagulation of peripheral retinal vessels so that there is no vitreous hemorrhage. He also did my ultrasound (not OCT as there is nothing he could see due to recurrent bleeds) and told me that now blood can not be absorbed and I must get a vitrectomy. Prior to this from feb to august I had got laser photocoagulation done in parts in two out of four quadrants but it did not prevent rebleeds. I finally got a vitrectomy done in september by a senior doctor Dr Avnish Gupta Insan at Shah Satnam Hospital. He did it nicely in just 15 minutes with the most advanced technique. Now I can see perfectly fine, my vision is 6/9 and the other eye thankfully has not been influenced by eales. I am a doctor myself and have done extensive research on eales during my frustating last 7 months. I do feel pain in my both eyes a lot though especially in right eye but that might be owing to excessive computer usage which is a part of my work.
    I am very thankful to Dr Dinesh Talwar and Dr Avnish Gupta of Shah Satnam Hospital in Sirsa and strongly recommend you both of them.

    I hope my experience will help you all and if you need my help then please email me
    gaurav.studyiq@gmail.com

  51. Nickolaos Nousis said,

    December 7, 2016 at 11:11 pm

    HI There I’m Nickolaos, I’m 40 years old and was diagnosed with Eales at 21 (1997). It appeared very suddenly in my left eye and I lost vision in that eye in 1997 but I maintain perfect vision in my right eye till this date, but not without a handful of bleeds along the way.

    In 2000=2001 I had 2 bleeds which cleared on their own.

    I’ve had laser treatment in my right eye quite a few times since 1997, most recently about 2 years ago.

    In 2014, after having introduced a heavy weight lifting program at the gym for a few months, I had a big vitreous haemorrhage in my right eye. Two weeks later I had another one and 3 days after that, I had a another.
    My specialist wanted to perform a vitretcomy to clear the blood which I refused as I was happy to wait.

    I began seeing a naturopath who helped me improve my diet rich in antioxidants, gave me a herbal mixture (I’m not entirely sure what was in the mixture) and started me on 2000 mg of vitamin C with rutin each day. She also gave me a remedy to wash out my eye every day with lemon juice and water and the blood cleared relatively quickly and I was back at work in 6 weeks time. I’ve also been drinking a mixture of chrysanthemum flower and goji berries for the past 2 years.

    Over the past two years, numerous tests and fluro angiograms show no new blood vessels and my doctor can’t believe how much my vision cleared without a vitrectomy. I’ve also been taking a Chinese herbal medicine for the eyes and retina called Ming Mu Di Huang Wan which I believe has been helping.

    3 months ago I started a weights program at the gym again and guess what? I had another bleed 2 weeks ago. This time it was very minor and with the lemon juice eye wash my naturopath prescribed me, the blood cleared in a few days and I only had one day off work.

    Its clear to me, as mentioned here too, that heavy lifting can cause blood vessels to bleed.

    For me, managing Eales has possible by eating a healthy diet, taking high dose of Vitamin C but with Rutin (rutin strengthens blood vessels), drinking the crysanthemen tea and taking the herb formula Ming Mu Di Huang Wan.

    Of course, I still check in with my specialist every 6 to 12 months. I hope it stays this way.

    if are experience floaters, I would highly recommend the lemon juice eye wash. Mix 15 drops of pure organic lemon juice with 60ml of tepid sterile water. While the water is still a little warm, wash the eye out with an eye bath, moving your eye back and fourth, up and down so the lemon juice can get over all aspects of the eye. Throw out and repeat 3 or 4 times until juice is finished. I do this twice a day and I find it really helps clear blood from inside the eye.

    Best of luck to everyone, if anyone wants to email me I’m on nicknousis@gmail.com.

    • Timothy G. Langenback said,

      December 11, 2016 at 9:00 pm

      Nickolaos, good evening and thank you for your story. I too was first diagnosed with Eales Disease when I was only 24. That was back in the early 1970’s in Philadelphia, Pa at Wills Eye Hospital. After numerous laser treatments in both eyes, things began to stabilize and since then, I have had no further extensive bleeding.

      The laser equipment being utilized back then would be considered quite ancient by today’s standards. It was a huge machine bolted to the wall and actually water cooled. Yes, I said water cooled.

      I am thankful that my vision did not disappear in either eye and at age 70, I am thankful that I can still lead a mostly normal life. I do have night blindness so I am not allowed to drive at night but otherwise, relatively healthy.

      Keep the faith. A number of research groups are working on Eales Disease around the world and I feel confident that they will make progress. Who knows, maybe one day, we can all get new retinas and see again like normal folks.

      Good luck!!

      Tim Langenback
      Clearwater, FL USA

      • Nickolaos Nousis said,

        December 18, 2016 at 10:45 pm

        Thank you for your story. I can only imagine how different the laser equipment was back then.

        I am very lucky I have an outstanding retinal specialist, the best in our Country pretty much and he together with my naturopath who has been helping my immune system stay strong, have been a huge help in this journey.

  52. Jigar said,

    December 14, 2016 at 2:44 pm

    Hi All,
    I am posting here after 1.5 years.
    Just a recap – I have Eales disease in my left eye since 2010 & have had multiple lasers.

    A lot has changed for me in the last 7-8 months. Here it is:
    – I had another bleeding episode in my left eye on 15-April-2016.
    At that time, I was in Atlanta, GA, US & I was visiting Dr. Jay Stallman from Georgia Retina. (10/10 for Dr. Stallman).
    This time the bleeding was such that almost 90% of my left eye vision was gone (Blood blocking the vision). But Dr. Stallman did not panic & asked me to wait – wait & wait. He said that he will not opt for Vitrectomy till he gives atleast 2 months for the blood to settle unless I give up. Though he mentioned that going for Surgery won’t be a bad decision either.
    It was a very bad time for these 2 months – I had to give up driving – had to work from home – always had a patch on my left eye & virtually worked only with my Right eye. A little additional physical movement & my vision will change drastically in left eye. My vision had reduced to 20/60 in my left eye.
    As the time passed, in these 2 months the blood settled gradually. It took almost 2-2.5 months for the blood to settle & I could start using my left eye again. Vision improved to 20/40. But my physical movement was very restricted.
    Not to forget, I was doing basic Yoga during this time. I did Anulom-Vilam & Tratak twice a day.
    Things were better & I went for a break back to my Home country – India.

    – I visited my Dr. in India & he too was of the same opinion to wait & watch. That time my Vision was 20/30.

    – I was about to leave back for US & 3 days before that, I had another bleeding episode. Again the things were bad & had to cancel my US trip.
    The India Doctor asked me to wait for 10-12 days before deciding got Vitrectomy.
    After 10-12 days, things were still the same & I had to opt for Vitrectomy.
    Doctor too suggested the same, as I was virtually not using my left eye.
    he first scared me a little with all the risks involved in Vitrectomy. (Mind you these are just 1% chance but the Doctors still have to inform us about it): Retinal Detachment, Eye infection & Cataract.
    I still opted for Vitrectomy even after hearing the risks.
    After this, the Doctor was a motivation for me as he never spoke about those risks again instead always about the life post-Vitrectomy. He always mentioned that I will be getting rid of this issue once for all. And more importantly, I will reduce the risk for further bleeding by 95% as during surgery he would be targeting the vessels responsible for bleeding.

    – I underwent Surgery on 16-Aug & after all the post-operative care, I should say (as Doctor mentioned), Vitrectomy turned out to be a boon for me. Today, after almost 4 months post surgery, I am having a very good vision in my left eye. My vision is back to 20/20 & no issues at all (touch wood). This is the best vision I have had in the last 6 years. I am back leading a normal life though I have only started little Physical activities yet. But more importantly, I am leaving a normal day-to-day life.

    Here is what I think of Vitrectomy now:
    – Although there are risks involved, but it is generally only about 1%.
    – The decision to go for it depends on an individual, how much are you struggling with the eye. As in my case, I had just stopped using it.
    – More importantly for me, undergoing Surgery targets the root-cause of the issue & reduces the chances for further bleeding unless another vein grows & bleeds in future or some vein is left out during surgery.
    – I feel, getting this Surgery done at young age helps one recover better & faster with least risk to the risks (I am 34 & things went really good for me).
    – Over the years, I think, Medical has progressed a lot & the Doctors are now a bit more experienced too which may further reduce the risk.
    – Sometimes, after my experience, I feel why there is so much fuss about undergoing Vitrectomy & why are we scared. May be since it is our eye – most important part of the body to lead a normal life.
    – Above all, post-surgery, its a beautiful life waiting for you 🙂

    One last thing, always TRUST your DOCTOR.

    Hope this helps.
    Again, this is just my personal experience & personal overlook for Vitrectomy & I am no expert to suggest/advise things.

    Thanks,
    Jigar
    (jigarsgala@gmail.com)

    • Nickolaos said,

      December 14, 2016 at 3:23 pm

      Hi Jigar. Thank you for your story and I’m so glad things have worked out. I didn’t mean for my post to sound anti vitrectomy. I’m not against vitrectomy, it’s just for me, given I am already blind in my eye, decisions regarding surgery are considered differently. If my doctor had told me vitrectomy was absolutely necessary, I would have considered it.

      Overall; it’s so good to hear so many different stories and how we are all managing this peculiar condition.

      • Jigar said,

        December 20, 2016 at 3:51 pm

        Hey Nickolaos,
        My post has nothing to do with your opinion for Vitrectomy.
        I just shared my experience.
        In general, there is a anti-Vitrectomy perception all over the world.
        Me too, before going for Vitrectomy, I was against it.
        But now, having got it done & things worked out fine, I feel as to why was I suffering for all these years.
        I narrated my story, so that the negativity for Vitrectomy reduces.
        But I agree that going for Vitrectomy depends on individual condition & individual case.

        It is always great if we have an alternative to Vitrectomy.
        Nothing like healing things naturally as you did.

        Anyways, this is a great place to share our experiences & read others.

        Thanks,
        Jigar

  53. Katharine Chavez said,

    December 14, 2016 at 6:03 pm

    My friend and I have started a group on FB! Since the early 80s I have never ever found anyone with my rare disease. So please find us on facebook…..Eales Disease Awareness and Support.

    I am a 42 year old Hispanic woman who was diagnosed with ED when I was 12. At that time doctors had no idea how to treat this disease. I have had countless laser surgeries and open eye surgeries (right eye couldn’t take any more trauma and retina detached). I have 20/30 in my left eye. I continue to struggle with retinal hemorrhaging and now have a tear on that retina.

    Last year I found a woman and now good friend suffering with this same rare disease..together we want to offer support to others along with awareness to the public! Please join our group! Or email me.

    KAT CHAVEZ at Chavezkatharine@gmail.com.

    Much love, Kat

  54. Aurrora Sanchez said,

    March 12, 2017 at 2:55 am

    My boyfriend suffers from eals disease and has lost his eye sight in his right eye. Was told they couldn’t help him. Is that true.

  55. Amal Kumar pal said,

    May 10, 2017 at 7:40 am

    It is first diagnosed in 2004 when I was
    31. Laser treatment is done in 2004, 2008 & 2017. Hemorrhage is more in 2017 and problem accordingly.
    Amal amalpal73@gmail.com


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