Відео

My brother is diagnosed with wilson disease ,the major symptom is that he cant speek although he was topper student in school .need prayers .we have started trientine hydrochloride 250 mg capsule 3 times a day and many more medicines .

I take zinc for my Wilson’s disease 50 mg 3 times a day for the past 7 years And I’m 54

specialist back then would consider people with this illness crazy and psycho and some people involved in law and psychology still do and ostrazize the poor people with this rare disease if only they knew how much energy it takes to barely survive with this they wouldn't have those prejudice

i have the all the physical symptoms since a kid from anemia,peeling,liver pain,sclerosis,parkinson episode,high copper, I mean I strive to live with it I took many test in hospital and eye doctors to confirmed even sent result to the mayo hospital all professionnal said It looks like I have the disease yet they didn't sent me a physical paper confirmation yet I must check with the professionals in the domain more since in quebec right now they are only good at giving psych med that kills people... I was ignoring the symptoms for alittle while and even laughing at times I brush near death but it's how I coped in feeling hopeless since the system is only pushing people down

Thank you for the video.

Hi, I would like to know how is Gluzin as a tablet, instead of Depencillamine

this is the point exactly: you can't ignore the neurological symptoms because they become so apparent and then the psychiatric label slowly stops holding so much power in determining which medicines you're allowed to take. I'm not so sure about complete psychiatric recovery after you've been chelated well. But I'm hopeful the psychiatric symptoms will one day disappear and I'll be normal. "Is she normal yet?" "No, but she's trying!" haha. Thank you for sharing your story mr Cory. seeing yourself lose the abilities you thought were always with you just feels heartbreaking. Medicines should sort out and hopefully there shouldn't be any psychological trauma or damage before you can get back to the abilities that made you who you are.

Misdiagnosis and refusal to help people with obvious and dangerous symptoms and evidence is a huge problem in the medical world where Wilson's Disease is concerned. I was left to die a very horrible death from this after having typical symptoms and blood tests showing I had it. I even have a genetic report stating I carry the two pathogenic genes and still no one is helping.

Thank you for sharing, you are an inspiration to find answers and to be an advocate for your own health. Prayers for you and your family.

Cory, thanks for sharing your journey. It is hard, it’s humbling to have a chronic health issue - you will never know all the people who will be inspired to keep fighting in their experience with Wilson’s because of seeing your video. You are more than a conqueror!

I feel relief now that i know that there are people out there with a normal liver and WD at the same time.

Similar story for my 17 year old in Washington State. They thought she had mono at age 8 but it was Wilson Disease. Luckily Seattle Chldren's is a short drive away. My daughter would love to talk to Virginia Lee about their experiences.

Mono is called glandular fever in other countries.