News,tests and questions

Hey Florence! How are you? I am an IB student and I have recently been learning about the medical problem that you have. So, I had some questions for you :P I was wondering, how have you accommodated to this eyesight problem in terms of you hobbies? For example, my eyesight is quite weak, so I have to make sure that I don't watch too much TV. So, how have you learnt to change your hobbies?


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

HARLEY STAPLES

You may have heard Harley Staples from the Harley Staples Cancer Trust.
But me and Harley were friends a long time ago when we were both toddlers we used to go round each others houses and play.
Well this post is dedicated to his family.
This is his story...

Harley was diagnosed with a rare leukemia, om January 28th 2009. Harley was so brave and strong during his illness. He had so many tests and treatments to make him better and he faced everyday as a brave warrior. Harley made friends in hospital he always put a smile on their face even though he was going through rough times, he still smiled.





Sadly he died  on the first of November 2009. He had fought so hard. I remember speaking to him on skype on his birthday and he was smiling because he had not seen me  for ages and he was happy i was settling in well in Italy.
When I visited England after he passed away i visited his grave  I remember