% | $
Quotes you view appear here for quick access.


  • binnieo binnieo Sep 12, 2013 9:56 PM Flag

    Study not a scam! This is an excerpt from Maurie Hill who was in the study... She has Stargardt dz

    "...Since my treated eye’s central vision was totally gone, I knew that any tiny but verifiable change in what I actually see would speak volumes about the potential this study had to one day lead to treatment for all those with Stargardt Disease, or even other diseases. During the course of the year, I sometimes thought I detected a change for the better, but have since come to the conclusion that it’s too hard to tell if there has been any concrete visual improvements or not. Visual field tests vary; a small change either way is not notable. And even though only one eye was treated, tests showed some minor variations in the untreated eye as well. Now do you see why it was difficult to report my progress?

    Sometimes I wanted to take a test over again, or retake it the next day to see what variations can occur despite no functional changes. But testing is expensive and the “light invasion” I endured was enough. Now I understand why reporting individual results sometimes is not as valuable as the accumulation of many patient’s results over time.

    Though I haven’t experienced a functional change in vision, Dr. Carl Regillo showed me the photographs that depict less darkness in the area of injection, indicating a lower presence of non-functioning RPE cells. Any positive anatomical changes that are discovered in this trial are exciting. The point of this trial was to determine safety, and to observe what happens to those injected cells over time. A doctor I briefly spoke with at FFB’s Visions 2013 conference who is involved in the London-based trial reminded me that they are injecting these cells into a very, very small area of the retina. But, he was quick and enthusiastic to say that there will be so much knowledge gained once this trial is complete. Dr. Regillo agreed, and knows that they will have answers to some of the following questions:..."

    Sentiment: Hold

    SortNewest  |  Oldest  |  Most Replied Expand all replies