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Wilson Disease Association

Wilson disease support group and discussion community

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Wilson Disease Association

Post Ryle’s Tube Feeding

In: Caregivers

zarin1

post-ryles-tube-feeding

200153

  • 11 Replies
  • Processing ...

My son, Kamir, has just had his Ryl’e’s tube removed 5 days ago, despite still having some swallowing issues. His treatment and progress have been continually reported since February 2016 on the thread NeuroWD (and several other threads). Some salient points are given at the bottom. With the removal of the Ryle’s Tube, the following are the immediate practical things that we have to ... Read More

Wilson Disease Association

Dizziness

In: Personal stories

soltyx

dizziness-57

200153

  • 5 Replies
  • Processing ...

I ran out of Syprine. So I decided to take Gluzin. 5days on Gluzin I didn't felt that dizzy feeling, but when I got my hands on Syprine again I take it before bedtime and as for Gluzin 2x a day. I noticed that I have a slight dizziness after I take Gluzin in the morning. Is it not recommended to take both Gluzin and Syprine? And by the way before that I was taking Natures Blend Zinc ... Read More

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Wilson Disease Association

Inspire's New Search Engine

ErikInspire's journal

ErikInspire

inspires-new-search-engine

200153

  • 44 Replies
  • Processing ...

I’m very happy to share with you Inspire’s new search engine. We believe the recent improvements that we have made will make it much easier for you to find what you are looking for. The search box at the top of the page (the magnifying glass if you are on mobile) will allow you to search across All Communities by default, or narrow it down to a single community that you belong to ... Read More

Wilson Disease Association

MICHELE

In: Newly diagnosed

MSHELLB

michele-2

200153

Hi...my son Victor is 29 and just diagnosed with Wilson's disease. He is having issues with swallowing and most of his symptoms are neurological. Speech therapist wants him to have another swallowing test with the camera going through his nose. Which won't be scheduled until next week. In the mean time what are suggestions from anyone going through the same thing? His first appointment ... Read More

Wilson Disease Association

What’s the story of your rare disease diagnosis?

Brian's journal

Brian

whats-the-story-of-your-rare-disease-diagnosis-1

200153

  • 346 Replies
  • Processing ...

Dear members, Today, more than 200,000 Inspire members have a rare condition. You have made Inspire a place to share your experiences with others who understand what you’re going through and help others at the same time. Many of you have described how long it took for you to receive an accurate diagnosis for your rare condition, while some of you found your diagnosis quickly. If you’d ... Read More

Wilson Disease Association

How do you make medical decisions?

Brian's journal

Brian

how-do-you-make-medical-decisions

200153

  • 733 Replies
  • Processing ...

Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel ... Read More

Wilson Disease Association

my brother last 2 year WISLSONE DISEASE patient

In: Getting a diagnosis

gourav1

my-brother-last-2-year-wislsone-disease-patient

200153

URGENT HELP ME Hello My name is Gourav I am from New Delhi (INDIA) my brother last 2 year WISLSONE DISEASE patient Treatment from g.b. pant hospital new delhi neurology age 18 Doctor give on this tab -1-pacitane 20 mg 2-olanzapine 5mg 3-pyridoxine20mg 4- penicillamine250mg My brother has take this medicine for last 1 year but after some time then start side effect 1-nerve system start ... Read More

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Wilson Disease Association

Stomach pain

In: Treatment options

Manual

stomach-pain-50

200153

Hi friends.. I had been treated with WD with pencillamine 250 for last 23 years... Due to the the unavailability of pencillamine, I stopped meditation for 6 months and after that started having ascazin with my doctor's advice.. For the last 6 months, I am having zinc only but there are some problems like stomach pain, gastricity and associated sleeping problems I have.. Now doctor ... Read More

Wilson Disease Association

Finding a doctor near Delaware

In: Finding a doctor

shiatk

finding-a-doctor-near-delaware

200153

Hello, I am a stable Wilson's Disease patient who has recently moved to Delaware and am looking for a doctor that has experience in or specializes in Wilson's Disease. I am willing to travel a bit, say to Philly or Baltimore. I see there is a Center of Excellence in Yale, but that is likely a bit far (unless other posters here have found the care to be worth the trek). Any input would ... Read More

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