The Wilson Disease Association Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Hair Color Reaction

kruzn297
  • By kruzn297 · New reply yesterday at 12:20 pm
  • Discussion in Newly diagnosed · 12 replies
  • My daugher was just diagnosed in October. About a year and half ago she wanted to go lighter with her hair so we went to the salon where I have been going for years and they foiled her hair. Once they ...

How many Trientin are you get/day?

Tomcat20174
  • By Tomcat20174 · New reply yesterday at 12:13 pm
  • Discussion in Treatment options · 1 reply
  • Hi! How many Trientin are you get / day (piece and mg) and where do you live ...

teeth and Wilson's Disease

Doreenr
  • By Doreenr · New reply yesterday at 11:01 am
  • Discussion in Help desk · 3 replies
  • Has anyone else who has WD had issues with their teeth? My daughter's teeth have shifted a great deal, basically undoing all the work of the braces that she had when she was a child and now I notice that ...

Rising Cost of Cuprimine

copper3
  • By copper3 · New reply yesterday at 5:27 am
  • Discussion in Treatment options · 22 replies
  • Has anyone noticed a rising cost with Cuprimine? My insurance grandfathered me so I only pay $25.00 a month. Cuprimine is non covered for new policy holders on my insurance. The cost of the drug has gone ...

SKI ROCKITING PRICE OF SYPRINE

eveningstar1369
  • By eveningstar1369 · New reply April 23, 2014
  • Discussion in Treatment options · 38 replies
  • I JUST GOT MY SYPRINE FOR THE MONTH. lAST MONTH THE PRICE WAS OVER $2,000. THIS MONTH IT WAS -HOLD ON TO YOUR SOCKS KIDIES-$6858.56. I AM ON MEDICARE tHANK THE GOOD LORD. THATS FOR 120 50MGMS.CAPSULES ...

Zinfate or Zinconia

sukudi
  • By sukudi · New reply April 23, 2014
  • Discussion in Treatment options · 10 replies
  • My son has been undergoing treatment for Wilson's for the past three years in Mumbai, India. He was taking Trientine. After his urine copper level came down to limits, first he was given Zinfate, 4 tabs ...

Reminder: Hepatic Encephalopathy Webinar on April 23

John2
  • By John2 · Posted April 22, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/22/14 Dear members, Here's a reminder that the American Liver Foundation (ALF), an Inspire partner, is holding a free Webinar about Hepatic Encephalopathy ...

Dandelion Root?

Succubus
  • By Succubus · New reply April 22, 2014
  • Discussion in Treatment options · 7 replies
  • Hi everyone, i tried to find info about dandelion root in the internet and nothing... I'm curious about if someone have tried dandelion root??? For liver cleanse? I'm not sure if it's safe or not for ...

Hypoparathyroidism

LondonChurch
  • By LondonChurch · New reply April 22, 2014
  • Discussion in Getting a diagnosis · 3 replies
  • Does anyone have issues with Hypoparathyroidism and Hypocalcimia? My daughter was recently diagnosed with this and they are calling her an anomaly. There is no apparent reason for her to have these issues ...

Low, low and.... low...?

kittykatbat
  • By kittykatbat · New reply April 21, 2014
  • Discussion in Getting a diagnosis · 14 replies
  • OK, my blood tests came back with low copper and low ceruloplasmin levels. My MRI came back normal and my 24 hour urine test came back low normal for copper. Is it even possible that I may have Wilsons ...

Son's Sleep Problem

nsmithsmom
  • By nsmithsmom · New reply April 21, 2014
  • Discussion in Parenting issues · 3 replies
  • My son was diagnosed almost 4 years ago with Wilson's Disease and a problem that is a constant is his sleep. He spends much more than the normal amount of time in bed sleeping or trying to sleep. His ...

Learn about Hepatic Encephalopathy at an April 23 Webinar

John2
  • By John2 · Posted April 21, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/21/14 Dear members, The American Liver Foundation (ALF), an Inspire partner, is producing a free Webinar about Hepatic Encephalopathy this Wednesday ...

About Wilson Disease

NareSargsyan
  • By NareSargsyan · New reply April 21, 2014
  • Discussion in Finding a doctor · 12 replies
  • Hi, my name is Nare, I am from Armenia...I have a friend with Wilson's disease. She found out about it a year ago, but Armenian doctors dont know about this disease and despite the treatment she is in ...

without Trientin

Tomcat20174
  • By Tomcat20174 · New reply April 20, 2014
  • Discussion in Treatment options · 21 replies
  • What medications, therapies are used where there is no other drug in the trientine to heal Wilson? What about the patients? I think in Russia ...

Wilson's Disease and High Copper in Kansas City

milica89
  • By milica89 · New reply April 18, 2014
  • Discussion in Finding a doctor · 11 replies
  • I'm looking for a doctor with experience in diagnosing and treating high copper and/or Wilson's Disease in the Kansas City or St. Louis area. I have not yet been diagnosed but strongly suspect that this ...

Ceruloplasmin down to 12.5

Lisabonisa
  • By Lisabonisa · New reply April 18, 2014
  • Discussion in Getting a diagnosis · 11 replies
  • Hi Everyone, I am new to the group. I have more tests lined up for both of my children tomorrow. My son's ceruloplasmin is down to 12.5 and his free copper is almost 50. He has many symptoms of WD and ...

b complex, amino acids, electrolytes

romama
  • By romama · New reply April 17, 2014
  • Discussion in Treatment options · 6 replies
  • In 2011, someone on this site talked about a supplement containig - b complex, amino acids, electrolytes - that helps patients of WD. Does anyone rember what was that? Thank you ...

Trientin

Tomcat20174
  • By Tomcat20174 · New reply April 17, 2014
  • Discussion in Treatment options · 23 replies
  • Also increased the price of your house trientine? Why become more expensive ...

High Free Copper Level of 77

GingerLox
  • By GingerLox · New reply April 16, 2014
  • Discussion in Getting a diagnosis · 5 replies
  • We are searching for answers for my daughter's health problems. We had a copper test done and the results are abnormal. Does anyone know if the following lab results would suggest a possible diagnosis ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

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About this community

The Wilson Disease Association Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Wilson Disease Association, an Inspire trusted partner.