September 29, 2018 @ 10:00AM — 12:00PM
Amanda Schrepel's walk for Wilson's Disease. If you can't attend, please consider a donation using the green button below.
Purchase a ticket to have your name appear on our attendees list
An invitation from me and my family to you and your family. If you are near Walsh, Colorado you can't help but find us. This walk is on the path encircling the only baseball park in town. Walsh is so small and homey that there is only one zip code for the entire place.
If you can't attend but would like to order t shirts or caps click below and they will be shipped to you.
Why do we have walks?
Going back to the fall of 2012, at age 25 is where my story begins. I had my first baby in March, and the nurses told me I might be anemic for a while. After 6 months I still wasn't feeling well. I was tired all the time and really light-headed. Blood work revealed a vitamin D deficiency and slight malnutrition; the doctor assured me it was nothing to worry about.
A couple months passed, and I didn't feel any better. I started falling down a lot in the evenings. I would just be walking across the floor and fall for no reason, and would crawl around afterwards, like I couldn't remember how to walk. The next morning I would wake up and walk just fine. About that same time I started getting muscle spasms and felt really shaking.
Time went by and I saw my aunt having health issues, shaking hands and head nodding. Her shaking looked like how I was feeling, and I found out her issues are called dystonia. Actually quite a few family members on that side have different types of dystonia. Now I had a clue for my doctor, so he ordered an MRI and EEG and set me to a neurologist for the results. While looking at the MRI, the neurologist paused to point out white spots. He said something like "Hmm, I've never seen that before. The machine must have had a glitch." Since he wasn't concerned with it, neither was I. (Copper shows up white on an MRI scan. Major indicator of WD!)
A few more months passed and I had medicine for the dystonia. Sometimes it didn't seem to help and I noticed there were certain buildings I felt instantly sick in and would go outside and feel ok again. By sick I mean they would send me into an instant acute dystonic attack. That basically means my arms and legs would twist and I had really obvious muscle spasms. One of these episodes happened in my hometown and our local RN saw it. She told my mom I needed to go back to the neurologist because it looked like a seizure. So I did some research and found blue polarized sunglasses would help prevent seizures. I also learned reflex epilepsy happens deeper in the brain so it doesn't usually show up on EEGs. The neurologist said it could be either partial complex seizures or A-typical migraines, such as hemiplegic migraines.
I heard of a doctor who was pretty good at figuring out odd cases, I went to him, and he issued another round of routine blood work. He also gave me some diet tips for seizure patients. I tried the diet tips and before the nurse called with the blood work results I was mentally going nuts. My brain was going a hundred miles an hour and my body was exhausted. She called with the test results and said, "Everything looked good, except low liver function, which is probably malnutrition". We talked for a little bit and I decided since my liver scores were still low and it had been 4 years, maybe it wouldn't hurt to research what I should eat to help with the malnutrition.
Before I began searching the web, I shot up a desperate prayer asking God for answers. I remembered reading the book 1000 Gifts and how a name for what was wrong was so much better than the sickness being unnamed, even if it was a bad sickness. That was my prayer, just a name for what was wrong. Within a few moments my fingers were clicking and lower liver function had a link to WD symptoms. There I saw tremors, seizures and low liver function all listed together. A Pinterest search showed a boy with his body twisted and cramped and it was like looking in a mirror. That was the same twisting and cramped posture my body would go into when I had an episode. I spent a few days searching everything I could on it, and found so much relief and fear in how much I could relate. I was so sure I had a name for it now! I asked my chiropractor if she had any zinc and she grabbed my hand to look at my to look at my fingernails. She said that there would be white spots on them if I was zinc deficient and I definitely had quite a few of those. She agreed it wouldn't hurt to try taking zinc. I liked that idea since what I had read on WD said the medication usually prescribed caused severe neurological deterioration during initial treatment. I was just getting ready for tax season to start, so I waited until after tax season to have my blood work done. Five months of taking the zinc, pretty much all of my health issues went away and the doctor confirmed that Wilson's Disease was the culprit. It was a long journey back to wellness, but I hope my experience can help others be aware, especially my family members who have similar symptoms. this disease affects generations and I hope to bring awareness about it.
The Wilson Disease Association is a 501(c)(3) nonprofit corporation designated by the IRS. All donations are tax deductible and are being used exclusively to fund the patient registry. Donations can be made on our website at www.wilsondisease.org or in the right hand column.
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