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Wilsons disease ......
ive been diagnosed of wilsons desease for 8 years now. lately my abdominal is expanding due to organs swelling. i just need to know if anybody is suffering the same or if you know anybody that had been diagnosed of a wilsons desease. i would love to chat to comfort me and you as well. so we will be aware of the prognosis of this desease ... thank you ANN L
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Hello Ann @annsnow, welcome to Connect. I'm hoping other members who are aware of Wilson's Disease will join the discussion and offer some advice or suggestions from their experience. I see from reading the information on Wilson's Disease on the Mayo Clinic website that Wilson's disease is a rare inherited disorder that causes copper to accumulate in your liver, brain and other vital organs.
-- https://www.mayoclinic.org/diseases-conditions/wilsons-disease/symptoms-causes/syc-20353251
Ann has your doctor suggested any kind of treatment plan to help you?
I did find some other information on Wilson's Disease that may be helpful.
National Institutes of Health -- Wilson Disease
-- https://www.niddk.nih.gov/health-information/liver-disease/wilson-disease
NIH - Genetic and Rare Disease Information Center - Wilson's Disease (see Treatment section)
-- https://rarediseases.info.nih.gov/diseases/7893/wilson-disease
Please keep asking questions and advocating for yourself. There are a lot of us here on Connect with different and/or rare disorders but we have one thing in common, we are all trying to help ourselves and each other by sharing our experiences and treatments.
John
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2 Reactionsi was taking cuprimine before, but i stopped for 2 years cz i was missed informed that i shouldnt stop taking my wilsons desease medication. NOW THAT MY SYMPTOMS ARE COMING BACK. my NEW HEMATOLOGIST in Florida, Jacksonville which i lived now. he wanted me to take my medication again, BUT MY MEDICARE WOULDNT PAY. I AM SO FRUSTRATED, I REALLY NEEDED TO TAKE MY MEDS TO STOP MY ORGANS FROM SWELLING. ANY SUGGESTIONS WHERE CAN I CONTACT ANY RESOURCES TO COVER MY MEDICATION???? PLEASE HELP....
Why WD Medicare not pay. Get a letter from your present doctor who wants youvtp take med again.
Who misinformed you. Get a letter from that Dr also. That might be hard.
Ann @annsnow, I found the following site that may help.
What Can I Do If Medicare Doesn’t Cover a Drug I Need?
-- https://www.ehealthinsurance.com/medicare/part-d-all/what-if-medicare-does-not-cover-a-drug-i-need
One of the things listed is to talk to your doctor and ask about substitute medications or request a formulary exception.
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1 ReactionTHANK YOU so much for your respond Sir JohnBishop
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2 ReactionsI hope it helps you get the meds covered by Medicare @annsnow. Can you let us know if they cover the meds? Thank you!
John
@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
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1 Reaction@ 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
@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.