Hello to the person that posted a thread about Acute Multifocal Placoid Pigment Epitheliopathy or AMPPE way back in 2001. I too have this condition and have not met anyone else who does nor know much about it. I was 21 when I suddenly noticed severe impairement of my vision and was diagnosed with the disease. I was otherwise a healthy 21 year old girl from Scotland and have since been left with scarring on both eyes and impaired vision. I can still drive etc (thank god) and lead a very normal life indeed as a PR professional where my attention to detail is an important part of my job. I just promised myself it would never beat me and did what I always wanted to do. Only I know what it is like to close one eye and see a distorted world (my right is much worse than my left). It's a bit like looking through the heat waves coming off the ground when it is really hot! I have also noticed through everything one eye is short and fat and the other is tall and thin, which is mad. But it seems to have cancelled out. In the dark, I freak out a bit as I can't see as well but life goes on and my work have been brilliant about it and given me a cinema sized screen! If anyone else has got this, please get in touch as it would be great to hear how it affected you.
Rachael

Hi There,

good to read your post - also the one from 2001.
I was just yesterday diagnosed with AMPPE in Moorfield's Eye Hospital in London. About three weeks ago I discovered a grey spot in the vision of my right eye that would not go away. I immediately went to see my GP. She actually told me to "chill out and forget about it". and I also thought it was not that serious. But last week I became aware of the fact that "it" actually is getting bigger. I again saw (this time another) GP, and she right away sent me to the eye hospital. They kept me there for the whole day examining every part of my eye. In the end the doctor told me all they can do is treat this with "corticosteroids". Because they think it is a kind of auto immun reaction. I had a very bad flu about two months ago, which could have triggered it.

I have the same spirit than you - this won't keep me from living a full life. Actually I am very lucky, because only my right eye is affected. It has a big spot of grey allmost in the centre. So, this is virtually blind. Although it still has the round vision. But together with the other eye I have quite a complete view.

It's good to hear from you that you are going on with your life. So let's keep going and not loose the good spirit.

Tom

Hi Tom,

I'm sorry to hear that you have also got AMPEE. How old are you? I was 21 when I got it - 6 years ago. I live round the corner from Moorfields now. It's a really strange condition because no-one knows anything about it and they don't know how to treat it. Your 'grey' spots will get better with time and it sounds like you have been lucky with it in just one eye. Yes lets keep up the good spirit. I don't even think about it now however sometimes catch myself doing stupid things like thinking a cup of tea is full when it is empty and I'm not too good at seeing in the dark! Stick in there and chin up!

Rach

Hi Rach,

to answer your question: I am 43 and luckily I also live around Moorfield's, so it didn't take me much time to get there last week. Thanks for your uplifting words. Things are actually going quite good and sometimes when I am immersed in something I completely forget about this grey spot in my right eye. I guess it's has all a lot to do with the inner attitude. One can focus on what is bad or on what is good. You seem to be getting along with it well too. My only little fear is that it might continue and spread out. For now it seems to stop. If it is the medicine (corticosteroids) or my change of diet - I don't know. Maybe both.
How is that with you? Does "it" still develop? Did it fade a bit over time? Where your both eyes involved from the beginning?
It is indeed a strange situation. The causes of this illness seem allmost unknown. However, I am happy that I discoerved this board. It really helps to connect with people who share the same experience.

Wish you further good luck with everything

Tom

Hi Tom,

Mine started with massive 'spots' in my vision and I couldn't read or drive or anything. I had multiple spots in my right eye first and then in my left a few days later. They lasted about 6 weeks and I didn't have any medication then (although they wanted to put me on steroids). After that, the spots healed up but the tissue is not as good as the original so now I have slight 'wobbly' vision - straight lines are wobbly etc. Its basically just like a scar on your skin but internal - not quite as taught as the original skin.

But it really sounds like yours is much better. I couldn't even read a book but luckily was a student at the time so had the summer to recover. Your vision shouldn't deteriorate but should get better and your brain adjusts to it and now I don't really notice that much. I'm just glad I am OK really - there are worse people out there with worse things. I did get really sick of the constant eye check ups but you sort of get used to it!

Take care over the next few weeks and get lots of rest. Let me know how you get on.

Rach

Hi Rach,

How are things going for you? I just came back from the Eye Hospital and they checked my eyes again. On the photos they made today I could actually see that it became a lot better. The big spot in the centre of my right eye became significantly smaller and the other spots around it - the ones that I can't see - have completely disappeared. My vision is a little bit better, I mean sometimes when I look at things with the bad eye the shapes and forms are shining through. But this is still far from beeing able to read with that eye.
So what we agreed on is that I take less and less steroid the next 6 weeks until I stop with them. And then I'll have another check.
The whole thing actually has some positive aspects as well. Since two weeks now I radically changed my diet inspired by the PH-Miracle by Dr. Robert Young. A friend of mine told me about him. And I thought, this is the time to do it. Maybe it even helps healing my eye. And as result of that I feel much better and more energized physically. Also I cut out coffee and sugar.
I try to see the whole thing as a warning from my body and hope I find the right responses to that warning.
By the way were you also treated by Dr. Andrews at Moorfield's? He was quite frank with me regarding the healing chances. He told me straight away this is probably not going to go away. But appreciate his honesty. So, let's see how it goes.

All the best (I'd love to have a chat with you live)

Tom