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Wish me luck, KF rings test on Monday and "normal" urine test......

akay
  • By akay · New reply 9:02 am
  • Discussion in Getting a diagnosis · 5 replies
  • First, I'd like to thank all of you again and again for being the backbone of my support these days. I feel such a relief in talking to you and I no longer need to "dump" my frustrations on my friends ...

How to import Syprine/ Trientine in India.

Tushar
  • By Tushar · New reply February 5, 2010
  • Discussion in Newly diagnosed · 12 replies
  • Just 15 days before my yonger brother has been identified having WD. He is being treated in Pune (India). Our doctor suggested that we should go for Trientine or Syprine. As per the primary information ...

Dont know what to do anymore

beechmom
  • By beechmom · New reply February 1, 2010
  • Discussion in Personal stories · 8 replies
  • Our son age 28 has been fighting wilsons disease since he was diagnosed at age 12. I have written our story on here before but now everything has progresses with his disease and us wondering where to ...

Earlier Diagnoses - a "how to" brainstorm

pedrichards
  • By pedrichards · New reply January 31, 2010
  • Discussion in Getting a diagnosis · 2 replies
  • Hello, I am just reading posts by Heather, Jeremy's mom, and responses to such. I think we can all agree here that any notion which downplays the strides we have yet to make concerning the early and most ...

Piotr

Piotr
  • By Piotr · New reply January 31, 2010
  • Discussion in Getting a diagnosis · 8 replies
  • Hello. I'm Piotr. I'm 29 years old. I live in Poland. I was diagnosed in April 2009. I have a question about diet at Wilson's disease. I was told by my doctors what I can eat and what I cannot. Sometimes ...

Help me understand test results!!!!!!!

akay
  • By akay · New reply January 31, 2010
  • Discussion in Getting a diagnosis · 5 replies
  • I got my results back. The doc. say everything looks normal, but I don't think he knows much about this disease and one of the tests was flagged as "low" on the lab results. Here are the results... Ceruloplasmin ...

how to get insured......

soniya
  • By soniya · New reply January 30, 2010
  • Discussion in Parenting issues · 1 reply
  • how can one can get insured(in india) who is suffering with WD ...

Oat Bran (food)

pedrichards
  • By pedrichards · Posted January 29, 2010
  • Journal · 0 replies
  • Wens. I run out to buy my fav. sourdough which is made with simple ingredients - ie. unenriched flour (the brand is "When Pigs Fly" of Me, Ma). since they were out of sourdough I bought honey and oat ...

Meds

chadsmom
  • By chadsmom · New reply January 28, 2010
  • Discussion in Treatment options · 2 replies
  • Has anyone had any success with finding a med to help with the drooling ...

Need Advice

lostbb
  • By lostbb · New reply January 26, 2010
  • Discussion in Treatment options · 4 replies
  • My brother was diagnosed with WD in the summer of 2007. He is 56 years old. Was able to start his treatment in Michigan Jan. 2008. He experienced a great set back and was hospitalized due to increased ...

multiple probs..

motu_baby22
  • By motu_baby22 · New reply January 26, 2010
  • Discussion in Newly diagnosed · 5 replies
  • my sis has just been diagnosed with wd. she is 20 now.earlier at age 5-6yr she could see a lil bit, suffered from constipation and sometimes nose bleed... later she lost her eye sight due to retinitis ...

I have a low platelet count

Nikkii
  • By Nikkii · New reply January 25, 2010
  • Discussion in Help desk · 5 replies
  • I have a low platelet count from having an enlarged spleen and due to religious and personal reasons don't want a platelet transfusion I am going to have an operation and heard of a medication that can ...

Could it be Wilson's?

graywolf022
  • By graywolf022 · New reply January 25, 2010
  • Discussion in Getting a diagnosis · 4 replies
  • Hi everyone! I have found this site very informative and I have learned a lot about this disease. It isn't me who is having these symptoms it is my boyfriend...Over the past 8 months of being together ...

my diagnosis

motu_baby22
  • By motu_baby22 · Posted January 24, 2010
  • Journal · 0 replies
  • just waiting 4 my reports.................... will they b +ve or -ve .............. am i a carrier of WD ...

can a wilsons disease sufferer have children

Nikkii
  • By Nikkii · New reply January 24, 2010
  • Discussion in Pregnancy · 16 replies
  • I was told by my doctor that I can't have children and if I did fall pregnant it would be dangerouse so my husband had a vesetomey. I have seen a few parents on here and am confused and a bit up set because ...

Can't swallow, using feeding tube, what do I put in feeding tube?

moontester
  • By moontester · New reply January 22, 2010
  • Discussion in Newly diagnosed · 4 replies
  • My daughter has a peg tube because she can't swallow food of drink without choking. All the liquid drinks like boost and ensure have 25% reccomended daily allowance of copper. I don't want any copper ...

How did you get diagnosed?

akay
  • By akay · New reply January 21, 2010
  • Discussion in Getting a diagnosis · 29 replies
  • Hi Friends...I'm new here. I have struggled for years and years with muscle pain, constipation, ringing in the ears, gait disturbance, anxiety, isolation, only to have doctors tell me I'm simply depressed ...

diet of WD patients

soniya
  • By soniya · New reply January 21, 2010
  • Discussion in Newly diagnosed · 5 replies
  • i want to disscuss about indian food for WD patients,as there is no site which can inform us about this ...

is RO water safe for drinking?

soniya
  • By soniya · New reply January 21, 2010
  • Discussion in Parenting issues · 9 replies
  • in india demineralised water is not commonly avaliable,is RO water is safe for drinking?please suggest me all possible ways to decopperised water.is indian bottled minernal water is safe?(eg.bisleri,kinley ...

Penicillamine side affects

JustinD
  • By JustinD · New reply January 20, 2010
  • Discussion in Treatment options · 15 replies
  • I have been on Penicillamine for 32 years. I am concerned about the side affects. I am starting to see either side affects from Penicillamine, or symptoms of WD, they are very minor so maybe it is age ...

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The Wilson Disease Association Support Community connects patients, families, friends and caregivers for support and inspiration. The Wilson Disease Association Support Community is sponsored by the Wilson Disease Association in partnership with Inspire.