AZOOR

Posted by Nicole8 on 5/8/2012 at 7:07 PM

I'm 29 yrs old and was diagnosed with AZOOR about a year after I finished high school. I would really like to meet others who have AZOOR and who understands what I'm going thru. I've actually posted about this before & got some replies, but I believe that post got deleted.

There are currently 8 replies

Re: AZOOR

Hi I m not sure if you are still after some posted as it seems a few months ago that u posted this but I ll put myself out there anyway. Hello I was 15 when I got azoor. That was eight years ago!! It does not affect me daily but does have its affects, I would love to get some opinions from some else who is going through the same thing. It's hard for other people to really understand, we r rare people after all!! Looking forward to your reply

Re: AZOOR

Hello. FINALLY, others who understand what I'm going through. I was diagnosed with AZOOR a year ago. My blind spot is in my right eye spanning the left part of my vision. The condition is more noticeable in natural light. I get purple and yellow visuals in my eye and also see a neon yellow blob when I walk into a dim room, but only for a few seconds. I'm very willing to experiment with some of the drugs I've read about such as Valtrex and Prednizone, but no doctor I've seen is on board for trying anything that isn't proven. Ugh...anyone have more information for me?

Re: AZOOR

Hi. I have had azoor for nearly five years. My doctor, Dr. Freund of the VRM in NYC is one of the prominent researchers and doctors for this, and other white dot syndromes. He has written many articles on my case and treatment. My current treatment is a high dose of immune suppressants, specifically Cellcept. A rheumatologist manages my medicine while Dr. Freund monitors the illness.
I haven't been as lucky to have little influence on my life, it has been detrimental to my quality of living, mostly do to the medicines side effects. The upside is that the medicine with the side effects has somewhat slowed the disease progression. I have significant loss none the less. With a rare disease such as this I would suggest seeking other opinions about treatment with the knowledge that this is new disease with no proven treatments and long term studies.
I am always available to talk about this incredibly rare disorder as one of the few people who have had it for a long time and tried experimental treatments.

Re: AZOOR

I have had AZOOR for over 7 years now. It has not changed since the beginning. There is a group on facebook under just AZOOR. I have not had any treatments. My vision loss has not been that bad. In the beginning it was a sudden blind spot in both eyes. Now i am having a slow deterioration of vision but not sure if it is cateracts, AZOOR, or macular degeneration. I wish someone in the vision field could see what i see.

Re: AZOOR

Hello Laurie - It's certainly worrying when your vision starts to deteriorate and you don't know why. It's hard to explain to the professionals too, isn't it - especially when, as is the case with ANZOOR, your visual acuity is okay and there's nothing much to see when the experts look into your eyes. It's only on the electrical tests of the retina that the problems show up. I haven't had any treatment for my AZOOR either, but that's because there's no known effective treatment for AZOOR. Anti-virals and steroids have been tried, but there's no evidence that they work. So I'm happy not to be taking medication that won't make any difference and might have unpleasant side effects. The other problem with AZOOR is that it's so rare the prognosis is uncertain. We just don't know what the future holds. However it would be worth getting your eyes checked by an eye specialist. Cataracts are a common cause of deteriorating vision and are easy to treat, and if you are developing macular degeneration, the sooner it's picked up and monitored the better the outcome. Hope this helps. Lynley

Re: AZOOR

I was diagnosed with AZOOR at Northwestern in Chgo and no change to symptoms since 7/2011. Prednizone was a horrible drug for me and no change to symptoms. Has anyone tried Cellcept?

Re: AZOOR

I was diagnosed with Azoor in 2001. I went for a few years with no changes. Then I began to lose peripheral vsion in my left I. My doctor put a steroid implant in my eye and it stabalized my vision. The implant last for 2 to 2.5 years and it is time to change it out. Has anyone else been treated with the steroid implants for this?

Re: AZOOR

hi my name is jessica and im from ga and was diagnosed with AZOOR it took the doctors 4yrs to finally diagnosed. and i would like to talk to someone who knows more info and knows what im going through, i just get so frustrated because i dont know why this is happening to me, what caused it. the doctors say i just have to learn how to accept it but its easier said than done.