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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.

kaylaHi, my name is Kayla Weselowski. My sister Chelsea and I were both diagnosed with Wilson's Disease in 2012. We live near Winnipeg, Manitoba, Canada. 

Chelsea is 29 years old and has severe brain and tissue damage from the disease as shown on multiple MRIs. She requires 24/7 care and has not been able to talk or move much since 2013. She was in the hospital for two years taking zinc, then tetrathiomolybdate which caused low WBC and several bouts of pneumonia, and now she currently takes trientine. 

I am 26 years old and have chronic pain, anxiety, depression, scarred muscle tissue, and muscle tension/spasms. Initially, I presented with muscle pain and tension, a fatty and enlarged liver, fatigue and swelling. For treatment I tried the same sequence of medications as my sister, and I am currently taking trientine as well. I believe that this medication causes much of my abnormal muscle pain, tension and spasms as side effects of the drug, but treatment options are limited at this time.

My goal is to raise awareness about Wilson's Disease, and to fund research for diagnostics and new treatments that will greatly improve the quality of life for people all of the world that are living with this disease. 

 
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emiliaJust when I expected to accomplish my goals and dreams, I started with an endless cycle of weird symptoms that worsened over time, like a cold dash of water poured on my life. I did not know what was happening to my body, and knew nothing but the fear that consumed me every day.

Suddenly, on my first day of work at RedBull as a “Wing Girl” (driving a Mini Cooper and giving Red Bull samples to people around the city), a job I loved. My boss, Paulina, was giving me instructions. When I put my right elbow on the table, my hand had this slight tremor. I said to my boss, “sorry I was in a rush to get on time to work and did not have breakfast”. I got freaked out and thought maybe I was nervous?, but emotionally I was fine. I have an outgoing personality, so that is why it was so weird to shake. As time passed, my symptoms worsened little by little. I never gave up my job or school (I was studying Italian language).

Here it is a list of symptoms that I experienced, meds, and possible diagnoses that happened over this period of time, a whole year to be exact. I was 20 years old:

* Slight tremors in my extremities, my fingers moved by themselves – diagnosed with “Essential Tremors” and got prescribed “Propanolol”
* Stiffness on my fingers and toes
* Dropping saliva out of the blue
* Extreme emotions and strong tremors – diagnosed with Early Parkinson’s Diseases- doctors prescribed me Levodopa and Dopamine (Akineton and Sifrol) and Rivotril.

Feeling uncomprehended by myself, doctors, friends, family, school pals, work pals, my whole social life was crumbling. Especially at work, there were times that I felt excluded from work party events and my work pals. There were times that I sobbed uncontrollably, like when you grasp air and then an explosion of crying comes out like a ticking bomb. I was extremely sensitive and felt excluded and attacked. I felt watched and constantly tested at work and that was challenging. I remember my boss came with me to drive and watch me drive to test my performance and efficiency when giving samples. I did not blame her at all, she was worried and I thank her for giving me the opportunity to show that I was capable of persisting with my difficulties. They put me to work with girls I had some trouble getting along with. But in the end, we ended up laughing together. I gave my best.

Then there came a time at work where I could not open cans because of the strong tremors that made me extremely clumsy. Then I had another appointment with a private doctor. This doctor gave me the diagnosis of “Early Parkinson’s Disease”. I went to my boss’ office to talk to her, ”Pau, I cannot keep going. I do not know what is going to happen, I cannot keep working like this. I cannot drive anymore, I cannot open cans anymore, and I cannot give this image to the brand. I have been diagnosed with Parkinson’s Disease”. I remember that day, and it was very painful. She looked distraught, her eyes got watery, and she hugged me.

I stopped working after a year of constantly challenging situations. I remember that my work pals had complained about me not being able to drive. They had to alternate driving with me. I was falling asleep driving because of the Rivotril somnolence side effects (YES! Very dangerous, doctors never warned me).

I was destroyed inside. No hope about my future, just the curse of this “who knows what” disease I had. There was a time at school I could not grip a pencil to write and my teacher, Lara, told me to write as best I could with huge typography -ha ha! (Even with this challenge, I finished my Italian semester with a wonderful score).

Although still employed by Red Bull, I had stopped working. Then I had a brain resonance imaging done. That was the worst day of my life, because I received the worst mistaken diagnosis: “Amyotrophic lateral sclerosis (ALS)”. I sent a text to one of my bosses and said,
“Hey I finally got a diagnosis”. She said, “what is it?”
I said, “Amyotrophic lateral sclerosis (ALS)”

She did not reply back. I went home and searched on the internet, what the hell was ALS? I started reading and I all I wanted to do was die in that moment. I was thinking in asphyxiate myself with a plastic bag on my head. That was it, all i saw was my life vanishing, and I was devastated and my spirit was broken, I was living a nightmare.

The next evening, I received a call from the hospital. They said that WD was probably the correct diagnosis. Soon after, I had an appointment at one of the most prestigious medical institutes in Latin America (after trying with private doctors for a year). I felt like a laboratory rat, where a bunch of doctors were examining me in the exploration room. They looked at my eyes and BINGO! THE KAISER FLEISCHER RINGS WERE THERE! WILSONS DISEASE CONFIRMED!

After all the diseases I got diagnosed with, I am ok with having WD, the prognosis is good if you are disciplined with the lifetime maintenance treatment and i feel lucky that got diagnosed on time.

I now want to get more involved with WD events and I am joining this fundraising because thanks to this type of support I had access to Trientine (a very pricey treatment that I cannot afford), which the Wilsons Disease Organization and MAP donated me, as well, to create awareness about WD, for those who were misdiagnosed and died.

Thats me in the picture getting the Trientine out of UPS in Spain, all happy and grateful for having it finally in my hands.

 
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Our family was hit hard in 2013 with 3 of our 4 kids being diagnosed with this deadly, life-altering disease. Since that time, we have had the sacred privilege of hearing story upon story of families that have been affected by WD. It is our deep desire to raise awareness of this rare and orphan disease, connect families that have or have been affected by WD, and of course to raise funds to further research for better medications for the future. My family and I invite anyone that wants to host a Big wow in their city to follow the link on this page for information and fill in the sign up form that will come to me.
 
Editor’s comment: Chris was the chairperson for the first two Big Wow fundraisers and is chairing again this year. Not only are Chris and his family warriors that are dealing with this disease but Chris is a warrior and champion raising funds for research and helping others do the same. Countless hours have been donated to this effort. Thank you Chris.
 
 
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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, her three younger siblings were all tested.  My  9-year-old daughter and 7-year-old son were also diagnosed with Wilson’s Disease.  They are currently undergoing chelation therapy and are doing well.
 
We sponsored the Big Wow to raise awareness of Wilson’s Disease and to build a support network for those battling this life-long disease.
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