My daughter who is 12 years old must be the only child in the UK to have retinitis pigmentosa which has mutated into Coats disease.
She has now completely lost vision in one eye since this was diagnosed three and a half years ago. After repeated surgery she retains deteriorating vision in the left eye.
She has seen the top specialist at Moorfield Eye Hospital, London, Professor Tony Moore, and is being treated in Dundee, Scotland.
I wonder whether a consultation at University of Pensylvania would be of any value or scientific interest?
Mary Findlay6:50PM January 14, 2010
Are people with Ushers Syndrome a candidate for this gene therapy as well. Also what about the one's that have Ushers Syndrom and Diabetes Type II
Tracy Alfordof LA11:25AM January 05, 2010
EA '78 wasn't a total loss!
Steve in TXof TX7:43AM November 25, 2009
My grandson, Gavin, was born with LCA, he was born blind and is now one year old. My daughter and son-in-law are constantly researching, hoping one day he will see. We believe one day he will. Thank you for everything you two are doing to help those with vision loss. Not until it happens to a member of your family does one realize how precious sight is. We are Gavin's sight right now and will continue to do whatever it takes to hopefully bring sight to a little boy who deserves to play baseball, ride a bike, and be able to see his older brother.
Thank you again and continue your research knowing you're helping families who thought there was no hope, but now know there is.
Bless you two,
Gavin's Grandma,
Nancy Encinas
Nancy Encinasof CA11:06PM November 23, 2009
my father is having diebetic. and he had some eye problems and the doctors in Sri Lanka have done some Laser treatments to his both eyes. after some time he couldnt see anything. Doctors in India and Singapore said the retinas has been dameged and they cannot recover that. therefore in past two yaers he is blind, but in one eye in some corneres he can see the light.
please be kind enough to send me some details about this and what is the procedure to recover this. I am from sri lanka.
akila jayaratne12:37AM October 27, 2009
I can only thank you for pursuing your research as we have a Lebers grandchild. She is two years old, and we hope that your gene therapy will be able to help her.How long do you think it will be before the injections will be given to the general population. At the present time , a blood sample has been sent to the USA for analysis and we are awaiting the results. We would go anywhere and pay any price to help our dear little Molly. She is being observed and tested at Childrens' Hospital in Vancouver, British Columbia, Canada. Many thanks to you both for all your persistance in your research.
Frieda Winklesof WA12:53AM October 26, 2009
I am wondering if this gene therapy surgery can help me. I am 47 and I have retinitis pigmentosa. I am legally blind with severe peripheral field vision loss My central vision is 20/30 and I do wear hearing aids for moderate hearing loss. I am a radiographer and mammographer. I am not doing so good as my vision is suffering so much. I have extreme difficulty in dim and dark places. I am at the point where I can't drive and I am currently unemployed. I feel so helpless. I am not married, so it is just me by myself. Again, can I benefit from gene therapy surgery? And maybe live a normal life?
Melindaof TX11:57AM October 25, 2009
My son was born with an genetic desease called FEVR. He has retinal folds in his left eye. Can this procedure help him?
marinaof NY4:26PM August 10, 2009
My sister has been legally blind since she was a small child,I believe it was progressive as she seemed to do well when younger,she is in her 60's now and the problem is very bad now.
She lives in Ocala, Florida
I am hoping that she could, if she wants it, be one of those to try it and see if it works for her, she has nothing to lose and possibly everythng to gain,even if it lasts only a few years,she yearns to see her sisters and her family.
I am not letting her know about this until I hear back from you. I hope you will respond to this and instructions on how to proceed.
thank you so much for your dedecation to this work.
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Mary Findlay 6:50PM January 14, 2010
Tracy Alford of LA 11:25AM January 05, 2010
Steve in TX of TX 7:43AM November 25, 2009
Nancy Encinas of CA 11:06PM November 23, 2009
akila jayaratne 12:37AM October 27, 2009
Frieda Winkles of WA 12:53AM October 26, 2009
Melinda of TX 11:57AM October 25, 2009
marina of NY 4:26PM August 10, 2009
Joan M Hintzke of WA 11:42AM July 30, 2009
Qzxajzlw of ID 3:32AM July 15, 2009