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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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12959828 mediumMy 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.

 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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