I got this by email. I did have to stop many things when I got this disease. I can't go out riding on my bike on my own, because I could fall.. I don't have very weak eyes but they are sensitive to light, so in P.E. I have to wear sunglasses but my class don't stare they just get along with it, which I like.
I don't watch a lot of television sometimes I get frustrated because I cant watch a subtitled film .
I still play my music happily , I just need to learn the songs without reading music .
When listening to music I play vinyl more than CDs because it is in larger print on the cover.
I like to read but I am not as bigger reader as I was because I prefer to read a book rather than my kindle .
On Wednesday we went to the hospital after over a year of waiting we have had the confirmation that my genes are definitely Stargardts and my sister was also confirmed to have the disease although her eyes are at the moment ok . She is 9 , I was 8 years and 11 months when I developed the eye disease . The doctor said we still have no cure , they are still testing on animals so he cant give me anything until he is totally sure of the cure .
If my sister develops the eye disorder I can help her as I know exactly what to do and how to cope.
My doctor suggested putting me on an experimental programme I will need to take saffron . Saffron is very expensive .
so after many tests, tears and pain we found out I have a mutant gene called ABCA4.
for the IB students I hopefully will be on this trial or something like it
http://clinicaltrials.gov/ct2/show/NCT01278277?term=saffron&rank=2
Thank you see you soon. Have faith and stay positive xxx
2 comments:
Dearest Florence, you have been in my thoughts today as I have been for my annual eye test at the optician, I really hate them, especially when they puff the air in, it is horrible, obviously not what you and Elsie have had to go through. I am a real wimp compared to you, I have just got ageing eyes a developing cataracts, nothing like you have to go through. You are truly brave and inspirational and I know you will help your sister through by your experience. I am always thinking of you. I have been reading up about the disease to try and understand what it is like for you. Like you say we all have faith that some cure will be made and as such time it is coping with the situation. Your courage is quite remarkable love you lots. Nanny xxxx
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