Samantha Aiken
My name is Samantha Akin. I am 18 years old, and I was diagnosed with Wilson’s Disease in January, 2015. Some of my symptoms were, my handwriting had worsened over the years (micrographia), and I had started having fine tremors in my hands with some irritability. I also had some joint aches and swelling for a few years. However, I was very fortunate that my pediatrician thought to check for Wilson’s Disease.
The result of my diagnosis was/is that my liver is currently at stage 3 of 4 of liver failure (written in the summer of 2015). The tests that have been run: I have had one liver biopsy, one upper GI endoscopy, a hour long MRI twice, countless blood draws / tests, and several 24 hr U/A, all before my 18th birthday. I had a neurologic flare in which I had a severe headache and could not speak clearly for roughly 2 weeks. I don’t know if this is because of the high dose of medication or my brain releasing copper. Perhaps worst of all I can no longer eat my favorite food in the world, chocolate.
Overall, I would say I’m doing okay. My purpose in hosting this WOW walk was to raise awareness of this disease so more people will be diagnosed and receive treatment earlier.
Alex and Marianne
Hello and welcome to our 2020 Big Wow Fundraiser page! Please read our story (further below) about how Wilson’s Disease (WD) has greatly impacted our lives over the last 10 years. Unfortunately, due to COVID-19, the Wilson’s Disease Association has gone fully virtual for the event this year, but with your support, we can make it the best one ever!
Please click the donate button (to the right) to donate and support the fight against Wilson’s Disease. All funding will go towards the WD Patient Registry. “The Patient Registry creates a framework for advances in diagnosis, treatment and potential cures for the disease. Not only will the current generation of Wilson’s Disease patients benefit , but this registry will serve as a roadmap for future generations to come.” Please visit www.wilsonsdisease.org for more information. Please note that we will be accepting donations throughout the month of October. The donations link will be deactivated at 11:59p.m. on 10/31/2020.
OUR STORY
Alex was a typical 20 year old in late 2009 when he began having neurological issues, necessitating him to drop out of college because of severe fatigue, abnormal gait, difficulty swallowing and abnormal speech. After a visit to our family doctor in spring of 2010 and emergency neurology appointments and tests, he was diagnosed with Wilson’s in August 2010 at Duke University Hospital. As they say, hindsight is 2020, we all realized those seemingly random symptoms were typical of Wilson’s. After aggressive treatment with a chelating medication to remove copper from the liver, the “free” or non-protein bound copper damaged Alex’s brain rendering him incapable of performing all activities of daily living without full assistance.
He has regained *some* abilities after maintenance treatments and physical and occupational therapies, but our goal for this fundraising event is to raise money for the Patient Registry that will enable us to determine best practices for diagnosis and treatment and support new initiatives for research and patient care.
Now, Alex is a happy 31 year old, but totally dependent for his care. He has a feeding tube for his main nutrition but can eat a bit of food and drink when fed by a caretaker. He needs someone to shower/bathe him, dress him, get him up and put him to bed and although he is unable to speak, he communicates with a sign board and many facial expressions!
Our hope is to raise awareness for WD, so that we can prevent future generations from the same devastating situation. Early diagnosis and treatment is the key! Thank you for supporting us and the WD community as we work together to better the lives of our fellow human beings!! Stay safe out there.
Donations
Your support allows the WDA to maintain this website, produce educational materials, support research, and hold meetings for people living with WD, their families, and the healthcare community.
Membership
As a member, you have the opportunity to communicate your concerns, share your experiences, learn about the most recent advances in Wilson disease treatment and research, and contribute to important decisions that need to be made so the WDA can be a strong patient advocacy group
WILSON DISEASE ASSOCIATION
Contact Us
- Toll Free: 866-961-0533
- Phone: 414-961-0533
Email: info@wilsonsdisease.org
