Stories of warriors touched by Wilson’s Disease and how they fought back by rallying people they know to walk with them and raise money for the patient registry.
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- Category: Wilson's Warriors
Hi, my name is Amanda Gross and I was diagnosed with Wilson’s Disease at age 19. I was incredibly lucky that a routine blood test revealing elevated liver enzymes sent me on a path to a quick diagnosis. Today, I am asymptomatic and treated with Galzin maintenance therapy.
Wilson Disease is a genetic disease that is terminal unless properly treated. There is no cure (yet). It affects the liver and manifests itself in other parts of the body. This is an incredibly rare illness, and any amount you can give will have a huge impact!
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- Category: Wilson's Warriors
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, neccesitating 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 symtpoms were typical of Wilson's. After agressive 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 fundraining 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.
All donations are used to fund the Patient Registry Research Project for Wilson Disease. The Wilson Disease Association is a 501 c (c) organization in the United States.
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- Category: Wilson's Warriors
My name is Cory. I'm a medically retired Navy pilot with nearly 1200 flight-hours (including 250+ combat flight-hours) and I served two deployments in support of Operation Enduring Freedom. I have an aerospace engineering degree, I have a beautiful wife, and I have Wilson Disease. I was diagnosed in 2018 at the age of 28 after my aircraft-handling became so poor that I pulled myself off the flightline. The MRI you see in the photo is the very one that secured my diagnosis.The first time someone alerted me to my tremor was in 2006. The first time my medical record acknowledged my Kayser-Fleischer rings was in 2011. I was misdiagnosed four times before before finally being treated, I attempted suicide three times, I was admitted to inpatient behavioral health twice, and I was bound to a wheelchair once.
All of my flight hours came subsequent to the first observation of my KF-rings... It's a miracle nobody got hurt.
I've had many, symptoms. Some symptoms, like sunflower cataracts and KF-rings, are benign and reversible. Some are nothing more than annoying. But then, some are outright crippling. This is an abridged list of my most debilitating symptoms:
Disinhibition/behavioral issues, cognitive flooding, perseveration, distractibility, scattered/tangential thinking, impulsivity, sexual promiscuity/exhibitionism, memory deficits, impaired judgement, difficulty initiating and completing tasks, emotional lability, depression, suicidal ideations, anxiety, panic attacks, nightmares, fatigue, dyssomnia, dysphagia, aphasia, dizziness, gait abnormalities (ataxia), rigid dystonia, muscle/joint pain (myalgia/arthralgia), respiratory depression, incontinence, and tremors.
Each symptom is individually challenging, but what’s worse is that they interact with each other in exponential synergy. Symptom management is critical to successful treatment, but it can be tricky. Side effects are often intolerable and lead to non-compliance. Gabapentin made me dizzier; zinc gave me acid reflux; antipsychotics and sleep medicines may have had a role in a 5-day, 110-hour period of total insomnia. In my case, Syprine caused intense dysgeusia. I completely lost my appetite because everything tasted like metal. It also caused me rapid neurological worsening. The pain was excruciating and I couldn’t eat or sleep. I lost 60 pounds.
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And after all of that...
I feel absolutely grateful to have Wilson Disease.
Don't get me wrong - it's a waking nightmare - but I have become a stronger, better man for surviving it. I got lucky. Not everyone does. I will never fly again, but I have found a higher calling.
Please help me pay it forward.
Donate to the WDA.
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- Category: Wilson's Warriors
Our family was touched unexpectedly by Wilson’s Disease on Christmas Day 2015 when my oldest daughter suddenly began showing signs of liver failure. She was admitted to the hospital and experienced numerous complications before passing away on January 19, 2016. Due to the complications and the advanced liver and kidney failure, we did not receive a diagnosis of Wilson’s Disease until after she died. Elise was 12 years old.
After her death and diagnosis, Elise’s three younger siblings were all tested and two of them were also diagnosed with Wilson’s Disease. Thanks to their early diagnosis and proper treatment, they are both healthy and blessed to be living a full life.
Today, Karina is 13 years old and taking Galzin twice daily. She plays the bassoon in the school band and is active in Scouts where she enjoys camping and doing volunteer work.
Jonah is now 12 years old and takes Syprine twice daily. He plays the French Horn and enjoys playing soccer and video games with his friends & cousins.
Their 16-year-old sister Annika is their biggest supporter in sticking to their low-copper diet, which is not always fun. (We all miss chocolate!!)
We are sponsoring this fundraising for the Wilsons Disease Patient Registry in honor of Elise and in thanksgiving for Karina and Jonah's health, with the hope that others affected by this life-threatening illness may benefit from early diagnosis and proper treatment.
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