My husband was diagnosed at 32. He had tremors, drooling, falling often, his voice totally left alone of trouble swallowing. He also was having accidents and could not drive for a long time and never was able to drive more than 30 or 40 miles. The destonia was bad He fell in our creek face down our neighbor picked him up, he fell in the bathtub at 3 am I called my brother to come help me because my husband was a big guy 6' 8".He got violent and threatened to shot me he had a pistol, the police asked for his gun and I was thankful. He would never have hurt me when he was well. His personality totally changed during that period of time. Much prayers for you, you will continue recovery through the years. My husband couldn't feed himself, but that came back, the falling stopped, his voice came back, the drooling stopped. Best wishes for all good things for you.
@crystalanderson80914 ай бұрын
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.
@AashArshad4 ай бұрын
Which diet you took after diagnosis
@AashArshad4 ай бұрын
Which diet you took after diagnosis
@AashArshad4 ай бұрын
Which diet you took after diagnosis
@WilsonDiseaseAssociation4 ай бұрын
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/
@katiamiheyeva29745 ай бұрын
Thank U
@fazaleahmad60647 ай бұрын
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 .
@usamausama99942 ай бұрын
How is your brother health now. I am also wilson disease patient. I am from Pakistan
@jaydoubleu34197 ай бұрын
I take zinc for my Wilson’s disease 50 mg 3 times a day for the past 7 years And I’m 54
@ggrraacceexx26 күн бұрын
does it help? would you say zinc improved it from progressing further? what other medications is recommended
@jaydoubleu341925 күн бұрын
@@ggrraacceexxyes it did the same but with no side effects Just the zinc
@ggrraacceexx25 күн бұрын
@@jaydoubleu3419 thanks jay!
@annemariemt568111 ай бұрын
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
@annemariemt568111 ай бұрын
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
@Thatsbannanas-d8c Жыл бұрын
Thank you for the video.
@usamausama9994 Жыл бұрын
What is your connection with wilson disease
@ravinderkaur4402 Жыл бұрын
Hi, I would like to know how is Gluzin as a tablet, instead of Depencillamine
@DIDIpsyche1 Жыл бұрын
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.
@rebeccapadmore8528 Жыл бұрын
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.
@Thatsbannanas-d8c Жыл бұрын
Same. So I made an eye appt. See if I have the rings of copper in my eyes. Sorry you suffer.
@rebeccapadmore8528 Жыл бұрын
@@Thatsbannanas-d8c sorry to hear that, I hope you find some answers.
@Thatsbannanas-d8c Жыл бұрын
Omg. Same here. I don’t think that I can accept this misery.
@Thatsbannanas-d8c Жыл бұрын
@@rebeccapadmore8528 so the rings, the tests, I can’t figure out why no doctors will prescribe penicilimide I’m toast.
@jennifermorrow99692 жыл бұрын
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.
@brooklynnchick2 жыл бұрын
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!
@lindabelamsel3 жыл бұрын
I feel relief now that i know that there are people out there with a normal liver and WD at the same time.
@kaelyneverham48843 жыл бұрын
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.
@tamigrass3 жыл бұрын
Mono is called glandular fever in other countries.