dear Nese, - hi all -

I think you read our old emails and so I can try to tell you some news.
Two years ago I bought the relation about rarediseases.org for $ 7.5, I
don't remember to have found nothing news but it's important to have a
complete vision about Adie and its synthoms, meaby you can found something
important for you. Let me tell you that "rarediseases.org" its a fantastic
organization wich try to help all the people have a rare disease; people who
nothing else try to help. I thing this organization need our little help,
for $ 7.5 and more and more.

About me and Adie, yesterday I had a control about the cornea transplate I
had on October 2001 on my eye with Adie. About the transplate all perfect,
now I can see 7/10 without glasses and 9/10 with glasses.
After the transplate my pupill was never large, I thought "uuuh! I resolved
two problems with one operation". After two months my pupill turn back to
enlarge and now I suffer the light more than before the operation.

But my oculist yesterday gave me a new eyewash (no pilocarpine) I tried it
immeditely (a drop) and it was great for all the day. Let me try it for all
this week and than I'll turn to let all know more informations about this
product.

take care
Roberta


-----Messaggio Originale-----
Da: "Nese Myles" <nese_myles@...>
A: <adie_syndrome@yahoogroups.com>
Data invio: giovedě 4 aprile 2002 0.34
Oggetto: Re: [adie_syndrome] Hi, I've been recently diagnosed with Aide's
pupil


> Hi all,
>
> Just to let everyone know I am in Boston, Massachusetts, USA. I am
> 26 years old. I was diagnosed almost a month ago with Aide's
> syndrome.
>
> So far the symptoms that I noticed in my eyes, besides my left pupil
> being dilated more than the other, that I sometimes have double or
> blurred vision, and sensitivity to sunlight. When I come indoors
> from bright sunny days, I cannot see out of my left eye and sometimes
> I see yellow spots. When my neuro-opthomologist shined the lights
> into my left eye, it was incredibly painful. My peripheral vision
> has increased dramatically too. I can see my computer monitor
> flickering as it refreshes. At night, the streetlights are very
> bright too, and it seems like I am always squinting. I also started
> suffering from migraines, especially on the left side of my face. I
> have been sweating a lot lately too, especially on my back,
> shoulders, and face, but I do not sweat on my forearms.
>
> As for my research so far, I have asked my Mom and my cousins on my
> Mom's side of the family, and nothing yet. I am going home to Arizona
> to visit, and I can ask more of my relations about it. Looked on the
> websites and I found the following links:
>
> http://www.whonamedit.com/synd.cfm/1837.html
>
> In addition, the rarediseases.org site offers an aide's syndrome
> packet for $7.50, I'm thinking about getting it, and if I do, I will
> let you know if it's worth buying. Since I live in Boston, there are
> many medical schools in the area that I can try to do more research.
> There is really nothing online to tell me about Aide's syndrome and
> others like it.
>
>
> take care
> -nese
>
>
> =====
>
>
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