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Name
Maria Pokorski
Born
October 14th, 1984
Home
St.Petersburg, Russia
Diagnosis
Stardgardt disease
Eyes Affected
Both
Eye Color
Grey
Age at Diagnosis
16
Acuity
0.2 (with correction
Treatment
Had a surgery on both eyes for improving the blood circulation. Used to undergo a basic eye blood circulation treatment every half a year (vitamins and medicine injections) but not doing this anymore. Taking vitamin complexes with Lutein.
Prognosis
Dropped significantly withing three years after diagnosis and has been stabilized since then (more or less). Still need everyday correction for peripheral vision (distance). Wearing contacts usually.
Family History
All family members have perfect eye vision (Mom, Dad and older sister). No cases of Stardgardt's disease are known in family. Grand-grand mother got blind by the age of 80 though, but no one really knows what it was exactly.
Impact On Your Life
With coming Stardgardt's disease into my life, it became harder in many ways. I had to face new difficulties in my everyday life that I had to accept emotionally, get used to and adapt to. It's hard to read (I read looking a few lines above using my side vision), recognize faces of people, study as a whole (I managed to finish university though somehow) and be involved in a lot of activities that are basic routine for most people. The disease has a great impact on my social life: I miss about 90% of visual information around and I am out of most part of nonverbal communication because I just can't see people's mimics and eyes when they are more than a meter away. That developed in a somewhat psychological complex and fear of unexpected situations, new places and being around new people. I also have a constant stress connected with employment issue - it's hard to work and be a good multitask employee.
I can't drive (although I hope one day I will be able to obtain some special driver license for driving in a familiar areas).
I have trouble seeing in dark and when it is very sunny and bright. It also takes awhile for my eyes to adapt to fast light changes (for example, when I walk into a store from sunny outside).
Positive Effects
Within last 8 years the disease changed me and my life a lot, but even though it was and still is hard to take, slowly I notice that I am adapting more and more, finding ways to overcome difficulties, and growing as a strong personality. I know that God doesn't give more than one can take, so I take it as something that eventually will bring only good. Besides, there is always a compensation in life. I have got a wonderful family, amazing friends and a miracle-husband who loves me for who I am and is very understanding and helpful, especially when it comes to my vision difficulties.
Besides, when I was in a eye clinic having surgery, I have seen so many completely blind people , so I can't really complain. I can still see. And my vision seems to be stabilized now, and I hope it doesn't start going down again.
Adaptations
Well, I still can read book, I just need to look a few lines above the line that I am reading, I got pretty much used to it already. I choose book with a larger print, or sometimes use a magnifier. I have heard there were lots of vision aids for people like me, so am planning on trying all that.
Working on computer, I use a windows magnifier which is really very helpful! Sometimes, I download books and enlarge the print in MS Word and read on the screen. Audio books are amazing at this point as well.
When I talk to people on distance, I usually pretend to look at their eyes, I mean, I look at the area where their eyes are supposed to be but don't really see them. That's quite a difficulty for me.
I don't drive, so I usually use public transportation or bike in summer. My husband drives me a lot.
Employment
I am not employed right now because have just moved to another place. I have been working for a year before that, when I finished university. I was an office-manager at a small company, so I did have more time for fulfilling my duties which is essential for those who have low vision. My employer was a really nice guy, so I was given a chance to organize and adapt my workplace to do better with my vision.
Now, when I moved, I have to find a new job here which is quite hard emotionally more than physically I think. I want to find something that I would enjoy and that won't require too much of a vision work. Hopefully, I will find my way.
More About Me
I was born in Russia and lived most of my life in St.Petersburg. A few months ago I moved to Alberta, Canada. I managed to get higher education in Russia and have a specialist of management degree. Though, I hope to be able to get further education that will be exactly what I want and like. I am good at drawing and dream about becoming a graphic designer (still not sure if I can make it with my eyes).
I truly believe that one day in future they will find a cure from Stardgardt's disease. At the meantime, it's good to realize that I am not alone and stick to those who can understand, share and help each other. A huge THANK-YOU to those who created this site! I am very happy to have found it!
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