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.
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?
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.
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.
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.
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.
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
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
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.
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.
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.
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?