Hello,
My name is Hazem and I am 44 years old. I’m from Egypt – Cairo.

Actually, I would like to express my high appreciation for the Stargardt’s website. It contains lots of very useful info and it is a very good way to experience exchanging thoughts for people who have Stargardt’s.

I have had Stargardts since I was eight years old. My brother and my sister have it as well from the same age. My parents are carrying the gene, even though they are not affected with the
Stargardt’s disease. They are normal persons. After we were diagnosed with Stargardts in 1980 by the NIH in USA, we were just using the magnifying glasses and the visual aids and my visual acuity was 20/200 at that time. Actually, my parents helped me a lot and made me live as a normal person 100% of the time. I didn’t feel that there was anything wrong with me. They treated me, my brother and sister very normally as for any other children. They let me enjoy every age stage.

I was very successful in my education and I graduated from the faculty of commerce in 1993. My father taught me how to be a strong guy and he taught me that any achieved success comes after great effort, patience and focusing on our targets. My father taught me that I should give more effort and more strength in order to conquer any challenges … that will be the price of any success. Therefore, I was always working hard and, actually, I have enjoyed my life as much as any guy of the same age. This gave me a lot of self-confidence and strong self-esteem.
Now I have been working in private business for 22 years. I now own a successful company. Even though the disease has progressed and my visual acuity worsened, I still have a happy life and I think that my poor vision is an advantage for me rather than a disadvantage because it makes me constantly have a very deep and sharp thought process. It also gives me lots of skills and abilities such as a good memory, the ability to understand people quickly and more deeply and I always seem to have the right outlook in most situations. My poor vision has always given me the power to cope with more challenges and enabled me to become a distinguished and attractive person.

For the past ten years, I have not been able to walk in the streets and open areas alone. I can move alone in the places which are familiar to me, such as my house and my work. I have benefited so much from the talking software such as Jaws and the voice over program in the Iphone. It is really useful and makes life and work very much more normal and easy. I manage my company by using these talking software technologies. Although it was not that easy to learn computer skills, but with some effort and patience, everything became easier.

I have three children and they are OK, I mean that they do not have Stargardts.

This summer I visited USA in order to see if there are any new treatment for Stargardts. I net two retina doctors and they said the only hope may be in the stem cell or in ghe gene therapy. Both of these still just in the study and clinical trails phase. One of the retina doctors referred me to Doctor Tsang in Columbia University in Manhattan. They enrolled me in the ABCA4 onset as a study for the gene therapy for Stargardts. I think that this study is still in the first stage. Also I knew that there are two studies for the gene therapy; one is in Oregon and the other is in Paris, France but I have no idea about these two studies. Also, I heard that there is a study for stem cell therapy in Florida, USA. I heard that there is more hope for the stem cell treatment than the gene therapy, but I am not sure. I am trying to gather more info about the stem cell therapy currently.

It would be my pleasure to be in contact with any person that has Stargardt’s or related to Stargardt’s. My e-mail is:
h.sharaf@elnour-vf.com.eg
Thanks.

Regards,
Hazem