Behind the Mystery-Wilson Disease: An Inherited Disorder That Results in Copper Build-Up in Organs
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- Опубліковано 5 бер 2023
- Wilson disease is a rare, inherited disorder in which the body's ability for removing excess copper is diminished. Over time, this results in copper levels building up in the liver, brain, and other organs, leading to damage that can greatly impact a patient's life.
Ginta, a Wilson disease patient, discusses her journey with the disease and how she is managing her condition today. We also met with hepatologist Dr John M. Vierling and neurologist Dr Danny Bega who discuss the signs and symptoms to obtain a diagnosis and the importance of adhering to your physician’s management plan.
We also have an exclusive in-studio interview with Alexion Pharmaceuticals’ Patient Experience and Insights VP, Wendy Erler and Wilson Disease Association Board Member, Rhonda Rowland to hear about the importance of industry and advocacy coming together to support the rare disease community.
Dr Vierling and Dr Bega are paid consultants of Alexion Pharmaceuticals, Inc.
Special thanks to Alexion Pharmaceuticals, Inc. for their sponsorship of this program.
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"Behind the Mystery" does an excellent job of describing Wilson disease, how to diagnose and treat it and how to manage living with this treatable, genetic liver disease. We hope this segment will be shared so awareness for this mysterious disorder can be increased. When it's diagnosed early and patients are compliant with their treatment plans, they can live a full normal life.
Thank you so much for your feedback on the segment. We are thankful to have gotten to assist in spreading awareness about Wilson disease.
My stepdad had Wilson’s Disease. He was in a medication trial at the University of Michigan. The form of Zinc saved his life. It interfered with absorption of copper in the digestion system. Every symptom was present, and it seemed he would die. The medication did prevent his death. Later he passed away from cancer. We loved him so much, and miss him everyday.
Hi Suzanne. We are so sorry to hear about your stepdad. It is so important that we spread awareness about Wilson disease and we thank you for sharing your story.
My mom got this disease in the late 1960's, she was in her late 20's to early 30's . She had tremors , lost her balance and was unable to walk, she became bed bound. She was admitted to hospital in St. Louis MO. , the doctors could not find out what was wrong with her, after a long time they did find out what was wrong with her, it was Wilson's disease. At the time they started her on what was a type of drug called an orphan drug, I do not remember the exact name of the drug. After starting the drug she did get better, the tremors stopped and she began to walk again. I can remember as a child me and my siblings had to be tested for this disease, the doctors said it was inheritable. Her parents did not have the disease, neither did my siblings. Thank God the doctors found out what the disease was, we could have lost her . I can remember her not being able to eat food with copper in it. I'm thankful there continues to be research into this disease, it is a horrible disease.
I got it from my mom n dad non working copper gene
I have hepatic Wilson’s disease. I recommend adding a rheumatologist to your care team list.
Yes, I have one and I have Wilson's disease. Definitely get yourself check out with this if your doctor hasn't already.
What medication you take for it
Thank you so much for sharing these information ❤❤❤❤
I still have it i got my liver transplant in 1991 🙌🏽
Wilson’s Disease in my family. Thank you so much for this explanation of a disease that most know nothing about.
I also have wilson disease. I was diagnosed at age 6 . Now I am 24 years old . The wilson disease association is a fantastic foundation for the patients living with wilson disease. They are doing excellent work
@@usamausama9994 Thank you for sharing with us about this, and we are glad you have found The Wilson Disease Foundation to be a helpful resource.
Hi Erin. We are so glad that you found this segment to be helpful in spreading awareness about Wilson Disease. Bless you and your family. ❤
Please I need treatments. I'm so afraid. My mom has lost two children in less than 10 years. I'm so afraid sir
I'm 22 and I have all symptoms of Wilson's disease which started noticing around 2015 and have been to hospital in my country and no doctor in my country have been able to say so. But I have done all my research online for years now. And I just noticed the yellowish circle around my iris. Please I'm afraid.
@blaisefon7696 Go buy a DNA test and just pay for your own test
You could just have plan old liver failure. That's what doctors thought before they found KFR.
Two sons with this horrible disease but trust in Jesus ❤
Zinc. That's all I can say.
It took 40yrs to get a diagnosis. Been treated symptomatically since 1983 for spasmodic torticollis n chorea as a result of WD. The only meds added to combat excess copper is zinc wjich iv been taking since 2012.
I lost my son because of Wilson's disease.