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ClintonMagus Inner circle Southwestern Southeast 3997 Posts |
I know that many of you here on the Café have a lot of information and a lot of friends and contacts in all sorts of disciplines.
We have some very good friends whose 14-year-old daughter was recently diagnosed with Stargardt disease, which is a disease of the macula that usually seems to result in legal blindness. The mom has been doing some "research" on the internet, but she feels confused by what she has read. Also, their ophthamologist is, admittedly, "in the dark" about the disease. Do any of you know of a doctor who is knowledgeable about Stargardt or of a facility who might be on or near the leading edge of research on the topic? Thank you.
Things are more like they are today than they've ever been before...
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Bob1Dog Inner circle Wife: It's me or this houseful of 1159 Posts |
I've had eight surgeries on my right eye and Wills Eye Hospital in Philadelphia has some of the best ophthmalogists in the world. Wills is now part of the Jefferson System, but I'd highly recommend your friend contact them. If it wasn't for the specialists and pioneering treatment I received at Wills I would be blind in my right eye.
I'd be very surprised if they didn't have information for your friend. http://www.willseye.org/ Good luck. PS I've also heard that Wilmer Eye Institute at Johns Hopkins in Baltimore is excellent but have no experience with them. http://www.hopkinsmedicine.org/wilmer/
What if the Hokey Pokey really IS what it's all about?
My neighbor rang my doorbell at 2:30 a.m. this morning, can you believe that, 2:30 a.m.!? Lucky for him I was still up playing my drums. |
ClintonMagus Inner circle Southwestern Southeast 3997 Posts |
Thank you. I have passed the information along. I am still interested in any more information any of you might provide.
Things are more like they are today than they've ever been before...
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Bob1Dog Inner circle Wife: It's me or this houseful of 1159 Posts |
You're welcome. Just trying to give you a bump.
Will you please keep me posted either on the thread or PM as to how your friends made out with either of the two I gave you? I know what it's like to live in fear of losing your vision. It's the most precious of our five senses, from one who's been there.
What if the Hokey Pokey really IS what it's all about?
My neighbor rang my doorbell at 2:30 a.m. this morning, can you believe that, 2:30 a.m.!? Lucky for him I was still up playing my drums. |
Woland Special user 680 Posts |
Where are your friends located, ClintonMagus? The Wills is certainly an excellent eye center. Other centers worthy of mention might be the Wilmer Eye Institute at the Johns Hopkins Hospital, the New York Eye and Ear infirmary, and I think there is interest in this problem at the Oregon Health Sciences University. There is an ongoing stem-cell clinical trial, you can read a patient's impressions of participating in that trial here.
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ClintonMagus Inner circle Southwestern Southeast 3997 Posts |
They are in the South, but that is not an issue. Thanks for the suggestions. I have passed along all of your suggestions thus far.
Things are more like they are today than they've ever been before...
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Woland Special user 680 Posts |
If they are in the South, I might also mention the Emory University Eye Center.
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rockwall Special user 762 Posts |
I think the Moran Eye center in Utah is pretty cutting edge. I've asked my wife if she is familiar with the disease and if she knows of any cutting edge specialists in the area and will let you know when I hear back from her.
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rockwall Special user 762 Posts |
My wife has a friend that they 'thought' had stargardt disease for a while. My wife is also professionally involved with the blind and visually impaired. She does believe that the Moran Eye center in Utah is pretty cutting edge in regards to this particular disease.
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rockwall Special user 762 Posts |
I just started a topic about these "I am unstoppable" videos but also noticed that the 2nd video in the series is about someone with Stargardt disease and thought you might be interested.
http://www.weather.com/weather-films/sho......p02.html |
The Magic Cafe Forum Index » » Not very magical, still... » » Stargardt Disease - Need Information (0 Likes) |
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