Hi Sue. I agree with Danielle. If I was just recently diagnosed as you are, and have good useable daytime vision without the severe field restrictions and...
Thanks Danielle! I think you make a really good point - I'd probably be thinking differently about this if I'd had RP a lot longer (well, or had it diagnosed...
Ian, Thank you so much for your take on this. I really appreciate hearing from those of you who have been dealing with RP longer than I have. I think with my...
Hello Everyone, I have a question about a situation that I am experiencing right now. Let me give you all a little background first. I am profoundly deaf and...
Hi Ashley, My name is Janet, I am also profoundly deaf and now legally blind, I've had many situations such as what you describe and would be more than willing...
JKM
jkmocean@...
Feb 2, 2007 4:27 am
8625
Hello Sue, Since your diagnosis is so recent consider doing the Vitamin A Palmatate treatment, its not a heavy duty one, its a matter of taking 15,000 units of...
JKM
jkmocean@...
Feb 2, 2007 4:40 am
8626
HI Ashley, i was diagnosed with usher syndrome in the 3d year of my degree.. i have a mild to moderate hearing loss.... i was always up front and open about my...
Hi Sue, if you are thinking Vit A, you should consult your Dr. you will need baseline bloods for liver function done.. and will need regular monitoring of the...
Hello Ashley, As I mentioned before I too have Ushers, and I am profoundly deaf as well. I think you do need to be firm with self-advocacy because people do...
JKM
jkmocean@...
Feb 2, 2007 7:05 pm
8629
_Implant Could Help Blind See Light_ (http://www.devicelink.com/mddi/blog/?p=276) A new electronic retinal implant could help treat blindness caused by ...
Hi Ashley, I think you are correct in your position. You should remind the person who hires that today you are capable and tomorrow holds ints own fate. Not...
Wow Sue Even as a sighted spouse I would hesitate! Seems like a bit much to bite off so soon after diagnosis. Hang in there and stick with us for a bit and...
I don't know how one would tell if it caused a speed up, slow down or stayed the same, since the rate of progression changes so unpredictably. At least mine...
... Palmatate ... units of ... Hi Janet, I actually am taking the Vitamin A already - my doctor recommended it right away. He didn't mention that it has to be...
Danielle, Thanks for the great advice. My doctor never said anything about worrying about my liver function with the Vitamin A, but someone else did mention...
Hello Bill, this is Janet from Gloucester, you said before and after taking Vitamin A Palmatate, can you tell me why you stopped? I take it, but I'm not sure...
JKM
jkmocean@...
Feb 5, 2007 8:24 pm
8639
hi, vitamin A is not a treatment.. it is thought to slow the progression of the condition. it is not a cure, and the end result of vision loss is enevitable. ...
hi, there are a few people that have had no benifit from vitamin A, whether taking it sped up the progression, or their eye condition was "programmed" to...
Hi Sue, i gather you havent been taking the vits for very long, so i dont think it would have done "much" to your liver yet... base line bloods are always a...
My husband has been on Vit A since his diagnosis 9 years ago and I'm not sure how it has necessarily affected him since I only met him 6 years ago. But I do...
Hi Janet, I don't have definite feelings either way about taking the Vitamin A palmitate. I went off it perhaps 9 months ago when I was having some minor...
Hello Thanks for all .Tanks Danielle for ur answers .I've been RP since 2001 and I am Xlinked RP.because my father is RP too and I very sorry that my father...
I have been able to find my Vit. A Palmitate, Bilberry, and varous other supplements at Vitamin Shoppe, as well as their website, Vitaminshoppe.com. Emil,...
Hello. I'm assuming this group has rules about spamming, as the previous poster did re: outsourcing? As much as I'd like to make money at home on my computer...
Hello. Last year I was diangosed with RP. It's been a roller coaster ride this past year for me. I just happen to come across the site here. I don't know what...
Welcome on Board David. Perfect place to share your-self out. Write/keep yourself updated on various research/progress's going across the globe. Since you have...
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