Can any of you describe what you believe may be the *cause* of Birdshot? I know about most of the treatments, the HLA- A29 antigen, and so forth, but I'm wondering if any of you may have a hunch as to the actual cause? Are any of you aware of any surveys that may correlate similar data for all Birdshot persons? I have thought about and tried many different things to see if it made any difference, but have so far had no luck. I can't help but wonder if there is some common thing between us all that is causing the Birdshot ... something like a fungus, or BPA's from plastics, or aluminum oxide from deodorant, or light emitted from computer screens, or food preservatives, or ??? I have read one comment on here that a guy said his Mother was cured, but he didn't say what cured her. Is she cured or in remission with Cellcept or Humira??? Would like to here from you and your thoughts. Thanks!

The disease may have been identified in 1948 in France, and was identified both by Gasse as well as Ryan and Maunemee in 1980. Its easy to see but somewhat difficult to diagnose, as there are about 60 similar conditions which cause similar eye symptoms. I requested another conference by Dr. Foster, and he hosted it in Boston on Sep 28, it was excellent. I have a conference call monthly, it is free call. If you contact me via the lefora forum (http://bsrc.lefora.com/) I will send you the date and number. Some interesting recaps: HLA A29 is not so much a diagnostic tool for confirming birdshot as much as HLA A29 negative is a tool to rule out birdshot. No idea what the triggers are and no one is looking. I did a survey years ago, and I can assure you, whatever you think it is, it is not. If the trigger were so simple as exposure to computer screens, plastic, food preservatives, etc. more people would have it, rather than being such a rare disease. 7% of the US population are HLA A29 positive, and clearly 7% of the population does not have birdshot.

Thank you for the reply ... I didn't figure it was easy or a cure would already be known, I just kind of wondered how scientific the search for a cure has been - what variables have been ruled out, if any? Do you know if such a list exists anywhere? It would be nice to see as a newer Birdshot patient, so each new person diagnosed doesn't have to start all over at the beginning. I noticed you are from Texas ... have you seen Dr. Susan Wittenberg from Houston? She is my Dr and is very helpful. I will sign up on the other forum as you've suggested. Thanks again for your help!

I have a background in quantitative management, management by statistics, so I have an in depth understanding of statistics. The problem with birdshot is, the disease has only been known for 33 years. The cocktail of cellcept and cyclosporine has been in use for about ten years. It takes about three years or longer to go into remission. We can say a "cure" but mathematically there is a small population and very few years to determine how durable cure is. The conference speakers, including Dr. Foster, were quite adamant that even in remission, an individual needs to continue to be vigilant and have annual ERGs. No studies have been done scientifically. Years ago, my group did a survey, and I can assure you, what we determined was, whatever you think is the trigger, is not. If you think about all the variables such as location, age, etc. no one has anything in common other than being Caucasian and HLA A29 positive (which is a marker for northern Europeans and comprises 7% of the general population, so it means nothing). I am in Dallas Texas. If you join the lefora group, you can send me a message (dagmara56) and we can arrange for a call if you wish. I do this frequently for people who are newly diagnosed. D

I see Dr. Janet Davis in Miami, at Balscolm Palmer. She is an expert in ths field. I have been fighting this for about 11 years. I have tried all of the oral medications with horrible side effects. About 4 years ago, I had redicerts (Not sure of spelling) implanted in my eyes. Since I am a steroid responder, that led to glaucoma and cataracts so I had those surgery also. I am a very difficult case. The redicerts last for about 2 and a half years. Didn't really put me into remission but helped. About a year ago had a new pair implanted and things seem to be ok now. In spite of these 8 surgeries and various injections into my eyes, my vision is pretty good. Don't really need glasses for distance and reading. BTW, I have 2 nephews who are opthamologists. They say that Stephen Foster and Janet Davis are the top 2 specialists in this field. About 3 weeks ago, I took part in a study. They were trying to measure blood flow of the eyes in birdshot patients which Dr. Davis has many of. Not sure if that study will be going anywhere.

Thank you both for the great responses ... it helps. I believe I am close to remission with the Humira, but that isn't really good enough ... I am searching for the cure ... as is everyone else. I am going to continue to read and study the forum topics and get myself more informed. I am very pleased with Dr. Susan Wittenberg and I believe she trained under Dr. Foster. Thanks again!

Dr. Foster literally wrote the textbook on uveitis and is one of the top experts in birdshot in the US and his peer would be Dr. Phuc LeHoang, from France. Other top docs in the US include: Janet Davis at Bascom Palmer Jennifer Thorne at Johns Hopkins Michael Samson, NYEEI Albert Vitale, U of Utah Robert Nussenblatt, NEI Ralph Levinson, Jules Stein The problem with seeing a physician who is inexperienced with birdshot is, this is not an eye disease, its long term treatment, and should require collaboration with a rheumatologist to dispense and monitor the IMTs, and they get bored after a year or two. I just mention this because it is your vision, and if you feel your physician is not fighting as hard as possible to save your vision, you may need to fire and rehire someone else. I have been there, done that, and its hard decision to make, but you must stay vigilant. D

I would add that an ocular immunologist who is skilled in treating BSCR can see changes in the eye upon examination that a "regular" ophthalmologist may not recognize. This happened to me and resulted in a major flare-up and vision loss. Fortunately, my retinologist sent me to Dr. Thorne at Hopkins who saved my sight.

Thank you. I have found this so informative. Only found out two days ago this is what I have and have been looking for answers to HOW and WHY too. Am dam scared but trying to be very brave to family.

I keep this site to direct individuals to the birdshot forum. We have 400 registered members from around the world as well as about 600 unregistered readers. Your questions will be answered there. The site: http://bsrc.lefora.com/ D

Thank you very much

Audnjim; Can you please contact me at dagmara@mindspring.com I have another birdshot patient from New Zealand who would be interested in communicating with you. D