The Wilson Disease Association funds research and facilitates and promotes the identification, education, treatment, and support of patients and other individuals affected by Wilson disease. All videos on our RU-vid channel have been reviewed for medical accuracy and are intended to help increase awareness and understanding of this rare genetic disease. People with Wilson disease cannot metabolize dietary copper and over time the excess copper builds up in the liver and brain. The defective gene is in the liver so patients can develop symptoms of liver disease. Other people with the disease develop neurological and psychiatric symptoms if the copper deposits in the brain. There are three proven treatments for the disease and more are under development. If WD is diagnosed early, treatment can begin and most patients can live a normal healthy life.
My beautiful wonderful 23 year old son was diagnosed 13 years ago with Wilson’s disease. It has stolen my son’s life from him. I am so scared for him. We are working with a team from Northwestern University in Chicago and I am praying things will get better. He doesn’t deserve this.
We're not sure about Cory's personal diet. However, a low copper diet is recommended during at least the first year after diagnosis. You can find out more here: wilsondisease.org/living-with-wilson-disease/copper-conscious-eating/
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 .
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
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.
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!
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.
