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← Return to Wilsons disease ......
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@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated a girl named .... Oh, forget that. Anyway. Does any Pharmaceutical company make a medicine you and your doctor think you need? If so, contact that company directly together. Look on their web site to see who in the company handles their clinical trials of that med, and ESPECIALLY any "EXPANDED Access" program for that med. Then talk to that person with your doctor, and see if that company can help you with what you need. It is an old practice, but a new law that makes it very helpful. The The Amyloidosis Research Consortium (ARCI.org) and NIH have a good webinar available to explain just that program. Tell Them I sent you. https://bit.Ly/1w7j4j8
Replies to "@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated..."
@peach414144 Hi, friend. I don't have a clue which would be better. I just know I have had to fight hard to get questions answered by almost any medical facility. The real key for a Expanded Access Or is it Extended Access, is to watch that webinar from ARCI.org having to do with the law and the practice of clinical trials and high priced medicine. Anyway, I figure I am getting almost close enough to the pearly gates to smell them, so as a last resort, it is time to beat the doors of Alnylam, Pfizer, etc. Oh, and about my eyes, I am slowly but surely losing my sight to corneal amyloid dystrophy and purpura (bloody spots) of the cornea. I shall try to look up Baskin Robbins....er, Baskin Palmer. I do prefer one over the other.
@peach414144 Hi, again, Peach. Just from a quick look, and some experience with Mayo Arizona, I think I would go to Baskin Palmer. The biggest problem with Mayo is that they spend enormous sums of money trying to find something that might be the cause of your problem, rather than what everyone else knows is wrong. If they put a little more money in their medical care and less in their buildings, they would get a better ranking, I believe.
@peach414144 - Hi - I lived most of my life in the Washington D.C. area. The Wilmer Eye Clinic in Baltimore, Maryland is well known. It is under Johns Hopkins. I had friends that had eye problems and they always used the Wilmer Eye Clinic.
I am loosing my site in my left eye. I wonder......the eye doctor wrote me THREE scripts for glasses. As if I can even afford one. BUT, then I thought wait a minute...if this is my disease causing my eye problems, shouldn't my health insurance cover the expense of my glasses?
@Sorry, I seem to be losing it. I meant Baskin Palmer in Miami as vs The Mayo Clinic. No need to respond. I do appreciate your answer and I do pray for you. Sincerely, Peach414144
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@ Dear Oldkarl Peach here: I am going blind. I respect your advise. Would you advise The Mayo Clinic Eye Department or Baskin Palmer University in Miami? Please. Peach414144