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Wilson Disease Association
United States
เข้าร่วมเมื่อ 10 มี.ค. 2020
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 TH-cam 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.
Medications and how to get them with Alyssa Paige-Stewart
Pharmacist Alyssa Paige-Stewart concluded Session 1: Current Approaches to the Management of Wilson Disease
Alyssa Paige-Steward, PharmD is a clinical pharmacist within Specialty Pharmacy Services at Atrium Health Wake Forest Baptist in Winston-Salem, NC. She is an embedded clinical pharmacist in a multidisciplinary clinic setting supporting gastroenterology and hepatology services. She earned her PharmD from the UNC Eshelman School of Pharmacy and completed a community-based residency at Atrium Health Wake Forest Baptist prior to joining the Specialty Pharmacy Services team in 2018.
Alyssa Paige-Steward, PharmD is a clinical pharmacist within Specialty Pharmacy Services at Atrium Health Wake Forest Baptist in Winston-Salem, NC. She is an embedded clinical pharmacist in a multidisciplinary clinic setting supporting gastroenterology and hepatology services. She earned her PharmD from the UNC Eshelman School of Pharmacy and completed a community-based residency at Atrium Health Wake Forest Baptist prior to joining the Specialty Pharmacy Services team in 2018.
มุมมอง: 35
วีดีโอ
State of the art in Wilson disease research with Dr. Zoe Marino
มุมมอง 6414 วันที่ผ่านมา
Dr. Zoe Marino was the featured speaker in Session 4: The Future Dr. Zoe Marino, MD, PhD, is a senior specialist in Hepatology at the Liver Unit, Hospital Clinic, Barcelona, Spain and an associated professor at Universitat de Barcelona. For the last decade she has been clinically involved in the management of genetic liver diseases at her institution, with special interest in Wilson disease. Sh...
What causes Wilson disease with Dr. Aftab Ala
มุมมอง 5414 วันที่ผ่านมา
Professor Ala led Session 1: Current Approaches to the Management of Wilson Disease Professor Ala leads the Adult Genetic Liver Disease Programs at the University of Surrey Guildford, Wilson Disease Center of Excellence and he is Professor of Hepatology and Consultant Hepatologist at the Institute of Liver Studies at King's College Hospital, London. He is Chair of British Association for the St...
Behavioral and mental health considerations with Dr. Sahil Munjal
มุมมอง 2514 วันที่ผ่านมา
Psychiatrist Sahil Munjal was included in Session 3: Living with Wilson Disease in the Real World Dr. Sahil Munjal is a Clinical Associate Professor of Psychiatry and Behavioral Medicine at Atrium Health Wake Forest Baptist. He has focused his career on clinical work in consultation-liaison psychiatry and education of medical trainees. He is double board certified in consultation-liaison psychi...
Gene Therapy 101 with Dr. Fred Askari
มุมมอง 3714 วันที่ผ่านมา
Dr. Fred Askari spoke in Session 2: The Future of Treatment for Wilson Disease As Director of the Wilson Disease Center of Excellence at University of Michigan, Dr. Askari has seen and treated patients, and consults with physicians and patients from all parts of the world, advising on the latest advances in Wilson disease diagnosis and treatment. He is the author of the widely read and quoted, ...
What constitutes a cure and how do we know we are there? With Dr. Michael Schilsky
มุมมอง 4314 วันที่ผ่านมา
Dr. Michael Schilsky led Session 2: The Future of Treatment for Wilson Disease Dr. Schilsky joined the Yale University Medical Center in 2007. He is a Professor of Medicine and Surgery in the Division of Digestive Diseases and Transplant and Immunology. He is also the Medical Director of Adult Liver Transplant at the Yale New Haven Transplantation Center and the Director of the WDA Center of Ex...
Managing Wilson disease: hepatology perspective with Dr. Uyen To
มุมมอง 3114 วันที่ผ่านมา
Dr. Uyen To participated in Session 1: Current Approaches to the Management of Wilson disease Uyen To, MD, is an Assistant Professor of Medicine at Yale University School of Medicine. She specializes in gastroenterology and transplant hepatology and works within the Yale Wilson Disease Center of Excellence. Dr. To earned her medical degree from Stony Brook School of Medicine and completed her I...
Navigating gut health and a copper conscious diet with Kelli Davidson, MS, RD, LDN
มุมมอง 2814 วันที่ผ่านมา
Registered Dietitian Kelli Davidson was part of Session 3: Living with Wilson Disease in the Real World Kelli Davidson, MS, RD, LDN, is a Registered Dietitian at Atrium Health Wake Forest Baptist. She has built a career in clinical dietetics after completing her master's degree. With a focus on cancer nutrition early in her career, she became a certified oncology nutrition specialist at Novant ...
Managing Wilson disease: a neurology perspective with Dr. JessicaTate
มุมมอง 4714 วันที่ผ่านมา
Dr. Jessica Tate presented her topic in Session 1: Current Approaches to the Management of Wilson Disease Dr. Jessica Tate is an Assistant Professor of Neurology at Atrium Health Wake Forest Baptist and Movement Disorders Fellowship Program Director. She leads the Interdisciplinary Movement Disorders clinic and the Huntington disease clinic. Dr. Tate is the lead neurologist in the Wilson Diseas...
Clinical research: a doctor-patient conversation with Dr. Fred Askari and Lana Escamilla
มุมมอง 1014 วันที่ผ่านมา
Dr. Askari and Lana were part of Session 2: The Future of Treatment for Wilson Disease Lana Escamilla is on the Board of the Wilson Disease Association and is Patient Advocacy Director. Lana is a Wilson disease patient who was diagnosed at 22 after experiencing liver failure. She temporarily lost mobility, the ability to read, write and concentrate and had tremors, slurred speech, and was days ...
Your treatment team: what is a Center of Excellence? With Dr. Sean Rudnick
มุมมอง 1514 วันที่ผ่านมา
Dr. Sean Rudnick directors the North Carolina Wilson Disease Center of Excellence at Wake Forest Baptist Sean R. Rudnick, MD is an Associate Professor of Medicine at Atrium Health Wake Forest Baptist. In his time with the Section on Gastroenterology and Hepatology he has served as Medical Director of Hepatology, Associate Program Director for the Gastroenterology Fellowship, and Director of the...
Wilson disease: discovery, advances, accomplishments
มุมมอง 5989 หลายเดือนก่อน
Wilson disease was discovered by American-born British neurologist Samuel Alexander Kinnier Wilson. His discovery of a new disorder that was characterized by neurological symptoms and cirrhosis of the liver is detailed in his thesis presented at the University of Edinburgh in 1911. He called the newly identified disease Progressive Lenticular Degeneration. It was later re-named Wilson disease (...
What you need to know about the Ultragenyx gene therapy trial for Wilson disease
มุมมอง 392ปีที่แล้ว
Dr. Eric Crombez Medical Director, Ultragenyx Dr. Crombez updates us on Ultragenyx’s CYPRUS2 study and clinical trial, a promising new gene therapy treatment for Wilson disease. You'll learn details about the study, its timeline and potential to restore ATP7B function in the liver. The CYPRUS2 study continues to enroll adults living with Wilson disease who are currently well-managed on standard...
So you want to participate in a clinical trial, here's what you need to know
มุมมอง 68ปีที่แล้ว
Ricarda Tomlin Yale University Clinical Research Manager Making scientific advances in Wilson disease is impossible without patient participation in clinical trials. Ms. Tomlin explains research terminology, reasons behind the sometimes complex designs of clinical trials and what to expect if you choose to participate in a research study.
How do you live well with Wilson disease?
มุมมอง 187ปีที่แล้ว
How do you live well with Wilson disease?
Getting your sleep with Wilson disease
มุมมอง 184ปีที่แล้ว
Susan Rubman, PhD Yale University Transplant Psychologist Approximately one-third of all adults will experience difficulty with sleep at some point in their lives. More than half of individuals with WD may experience sleep disturbances. Dr. Rubman, who has a specialty in behavioral sleep medicine, discusses signs and symptoms of insomnia and other common sleep complaints in WD, provides tips fo...
Orphalan: makeover for an old drug and new studies for Wilson disease
มุมมอง 158ปีที่แล้ว
Orphalan: makeover for an old drug and new studies for Wilson disease
Depression, anxiety and Wilson disease: what you need to know
มุมมอง 267ปีที่แล้ว
Depression, anxiety and Wilson disease: what you need to know
Vivet Therapeutics gene therapy for Wilson disease
มุมมอง 207ปีที่แล้ว
Vivet Therapeutics gene therapy for Wilson disease
Wilson disease: how do you know if treatment is working? With good monitoring
มุมมอง 302ปีที่แล้ว
Wilson disease: how do you know if treatment is working? With good monitoring
What is the Wilson Disease Registry and why we need it.
มุมมอง 116ปีที่แล้ว
What is the Wilson Disease Registry and why we need it.
How PET scanning may help with diagnosis and monitoring of Wilson disease
มุมมอง 106ปีที่แล้ว
How PET scanning may help with diagnosis and monitoring of Wilson disease
New Guidance for the Diagnosis, Treatment and Management of Wilson Disease
มุมมอง 1.5Kปีที่แล้ว
New Guidance for the Diagnosis, Treatment and Management of Wilson Disease
Copper Conscious Eating: Carolyn O'Neil, RDN interviews Amanda Elsts, Wilson Disease Patient
มุมมอง 2342 ปีที่แล้ว
Copper Conscious Eating: Carolyn O'Neil, RDN interviews Amanda Elsts, Wilson Disease Patient
Copper Conscious Eating: Carolyn O'Neil, RDN interviews Laura Kalt
มุมมอง 1042 ปีที่แล้ว
Copper Conscious Eating: Carolyn O'Neil, RDN interviews Laura Kalt
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.
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.
Which diet you took after diagnosis
Which diet you took after diagnosis
Which diet you took after diagnosis
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/
Thank U
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 .
How is your brother health now. I am also wilson disease patient. I am from Pakistan
I take zinc for my Wilson’s disease 50 mg 3 times a day for the past 7 years And I’m 54
does it help? would you say zinc improved it from progressing further? what other medications is recommended
@@ggrraacceexxyes it did the same but with no side effects Just the zinc
@@jaydoubleu3419 thanks jay!
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.
What is your connection with wilson disease
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.
Same. So I made an eye appt. See if I have the rings of copper in my eyes. Sorry you suffer.
@@Thatsbannanas-d8c sorry to hear that, I hope you find some answers.
Omg. Same here. I don’t think that I can accept this misery.
@@rebeccapadmore8528 so the rings, the tests, I can’t figure out why no doctors will prescribe penicilimide I’m toast.
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.