Eales Disease

Here we go again!

erareeve — Tue, 03 Mar 2009 18:17:34 +0000

Now I am starting to have issues with my right eye. They need to publish a guide called Eale’s disease: For patients. Not Eales disease and severl words following it that you need to be a Latin major to comprehend.

erareeve — Mon, 29 Dec 2008 16:50:51 +0000

My Personal account of living with Eale’s disease.

Eales disease and some of its monikers

erareeve — Mon, 24 Nov 2008 16:21:29 +0000

Some of the names associated with Eale’ s-

macular edema, retinal neovascularization, periphlebitis retinae, retinal periphlebitis, retinal vasculitis, vasculitis retinae, Idiopathic obliterative vasculopathy, Idiopathic recurrent vitreal hemorrhage, Peripheral neovascular retinopathy, Idiopathic obliterative vasculopathy, Idiopathic recurrent vitreal hemorrhage, idiopathic edema of the eye…

I am quite sure this list could go on for a while. Still no real answers on what causes it, but looking for patients who have been diagnosed with Eale’s disease.

In recent years, immunological, molecular biological, and biochemical studies have indicated the role of human leukocyte antigen, retinal autoimmunity, mycobacterium tuberculosis genome, and free radical mediated damage in the etiopathogenesis of this disease. However, its etiology appears to be multifactorial.

How I used to see

erareeve — Thu, 20 Nov 2008 17:11:18 +0000

Here is a picture of how I used to see before my Vitrecotmy. I do not believe it is always necessary to have a vitrectomy if you catch the disease early and can stop the neo-vascularization before it causes too much damage to your eye. I however was not good about regular checkups, and now I am a huge proponent of going to see an optometrist even if you have perfect vision, no matter what your age. Whether you have Eale’s disease or not…. it can’t hurt visit with your optometrist on a regular basis.

Chasing it-

erareeve — Tue, 18 Nov 2008 15:25:48 +0000

If you read the first post, then you know The National Eye Institute suggested I should give The National Organization of Rare disorders a try for some answers about Eale’s disease. I gave it a try and asked them if they knew the prevalence of Eale’s disease or anything about it.

Here is what they say:

Possibly one of the organizations below can provide some guidance:

Organizations related to Eales Disease
NIH/National Eye Institute
Building 31 Rm 6A32
Bethesda MD 20892-2510
Phone #: 301-496-5248
800 #: –
e-mail: 2020@nei.nih.gov
Home page: http://www.nei.nih.gov/

Schepens Eye Research Institute
20 Staniford Street
Boston MA 02114-2500
Phone #: 617-912-0100
800 #: –
e-mail: geninfo@vision.eri.harvard.edu
Home page: http://www.theschepens.org/

Thank you for contacting NORD.
Best wishes to you.
Dave
–
Dave Senseney
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100 Fax: 203.798.2291

http://www.rarediseases.org

NORD Medication Assistance Program: http://www.rarediseases.org/programs/medication

NORD Subscription Service

http://www.rarediseases.org/programs/subscriptions

——————————————————————————————–
The National Organization for Rare Disorders
(NORD) is a national charity dedicated to the identification, treatment, and
cure of rare “orphan diseases”.
To learn more about NORD, visit www.rarediseases.org.
To subscribe to NORD’s free e-News, send an e-mail to:
subscribe@rarediseases.org.

Foiled again. I will keep looking and posting what answers I do find. If you have any personal account regarding Eale’s disesase please let me know.

I asked the National Eye Institute about Eales disease

erareeve — Fri, 14 Nov 2008 01:40:44 +0000

Here is what they said:

Thank you for your inquiry. The National Eye Institute (NEI) conducts and supports research that leads to sight-saving treatments and plays a key role in reducing visual impairment and blindness. The NEI is part of the National Institutes of Health (NIH), an agency of the U.S. Department of Health and Human Services.

We do not have statistics on the prevalence of Eales disease.

For information about Eales disease, please visit the following webpage:

National Organization of Rare Diseases (NORD), Eales Disease
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Eales%20Disease

The following online document by emedicine offers a scientific discussion of Eales disease at http://www.emedicine.com/oph/topic637.htm.

You may wish to search ClincalTrials.gov to find studies about your condition. ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.
http://www.ClinicalTrials.gov

We hope this information is helpful.

Office of Communication, Health Education, and Public Liaison

National Eye Institute
National Institutes of Health
Bethesda, Maryland 20892-2510
USA
Website: http://www.nei.nih.gov
E-mail: mailto:2020@nei.nih.gov

Oh well, I’ll keep searching and keep you updated.