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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.

aleks samardzic warrior

Samardzic1

Our daughter Katarina was diagnosed with Wilson’s disease when she was only four years old. We were very fortunate that it was an early diagnosis, and the disease was caught and treated before severe symptoms started occurring.

The doctor that initially diagnosed my daughter has continued to care for her, and she has done an amazing job. Whether it’s staying on top of the latest treatments or discovering new devices that can help monitor and treat my daughters Wilson’s disease, our doctor has done it all from the start, and we are immensely grateful for all the help that she has given us.

We feel that it is our mission to bring awareness that would first lead to earlier diagnosis, then to help raise funds for the research to find safer treatments and finally a cure so that others will not suffer the devastating effects of this not-so-known disease.

We would like to be able to support patients and help their families through their journey.

Katarina just turned 18. This experience of getting diagnosed led to her career interest in health sciences, which she is going to study at Stonehill College starting this fall, September 2018.

 

 

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amanda elsts

elsts1

So just a little disclaimer asking for help is not one of my strong suits. I’m not talking about the big stuff like help moving or on a resume. I mean asking for help with the everyday mundane trivial things like getting out of the shower, help to get up, walking from point A to point B, or admitting that I can no longer hold down a full-time job. Battling Wilson’s Disease definitely has been a humbling, eye-opening, and stretching experience. The most frustrating part is knowing that only a year ago you were doing fine working, running, sewing, driving, able to finish a sentence on a consistent basis without stuttering... it’s like knowing how delicious dark chocolate and peanut butter taste and then being told you can’t have them any more (yes that was a WD joke 😉). There are so many trivial things that you take for granted every day like listening to music or tv a normal volume and then all of a sudden, any sound seems like too much. Or the pain in your head gets to a fever pitch that you are short with everyone around you and you aren’t really sure why. These aren’t complaints they are just facts of where I’ve been and where I’m at in my journey. I was asked to share my story with you and while I know many are freed by hearing another’s testimony it still feels like I’m standing in front of you baring some of my ugliest flaws.

So here it goes!

I can pinpoint the day I knew something was terribly wrong with my body. Looking back there were little hints before my body fell apart, but nothing that you could put your finger on… like falling asleep in the middle of a matt exercise only to wake up at the end of the workout. And even though I was eating well and working out regularly I just kept getting super sick; as in the flu 3 months in a row. I went to my family doctor at the time and I went to my gynaecologist and both said the same thing you must be depressed or stressed or having some sort of emotional break down it’s common for women in their 30s (que eye-roll). Then I had one good month then BAM! On March 22, 2017, I was down for the count. I found myself so dizzy I couldn’t walk let alone in a straight line; I spent a lot of time crawling. Then I realize I’m not really dizzy like you get when you’re dehydrated. My head is literally moving without my control, all I kept thinking was how do I get off this ride (it’s crazy YouTube it)!? A week goes by, I am praying like crazy at this point, hoping that very soon this will be over; it’s just a weird bug. Then in the middle of praying one day, I remember that I knew a doctor that might actually listen and believe me. I had met this doctor 3 months before through my employers, at the time, who paid for our whole team to go to this doctor for detailed blood work on our hearts (Seriously best job ever!). So, I get into see my new doctor and he is like wow this is not you at all! Let’s get some tests going. For the next 6 months or so I was getting tests done and seeing specialists. Finally after my last failed neurologist has done what tests they think need doing and came up with nothing, my D.O. remembers that he has had someone with Wilson’s Disease in the past and so we test for that sure enough that was it. Best part he already knew how to treat it so I didn’t have to find another doctor! I cannot convey to you in words the vast relief I felt to finally know what was wrong with my body and to be able to take some action. All I had to do was change my diet, take some pills, and come in for quarterly testing! Praise God!

I am now somewhere around 9 months into the chelation process and doing much better. I look back at last summer and smile. I have learned so much about myself and feel truly loved and cared for, my family and friends have stepped up and rallied around me. I know who I can count on and that its ok to lean on others. God is still working on me accepting help graciously and admitting when I need a rest, but I know he’s there backing me up every step of the way. I think sometimes we focus too much on the I cannot in life and not enough on the little wins that you can achieve every day. I try to do just one thing each day that I can count as a win; even small things like contacting a friend or spending time in prayer. I can do most things on my own now like stand on the beach without help, bathe all by myself, drive, and sew on good days. There are still some really rough days but those are getting farther and fewer between. I know this kind of recovery isn’t everyone’s story, but I am hopeful that through awareness we won’t feel so alone in our battle and help find a way to make this disease more livable. There is some very interesting research being done. And my prayer is that with your donation we will get one step closer to finding, if not a cure, a way to identify Wilson’s Disease quicker and hopefully make it easier to live with.

 

 

 

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Emilee Williams warrior

emilee williams1

For the past five years, Emilee Williams (now 26 years old), has been struggling with Wilson’s Disease. She graduated with honors from Rockhurst University in just three years. She received a bachelor’s degree in Exercise and Sport Science and a minor in Spanish. She had just started her first semester of graduate school at Rockhurst University for her doctorate degree in physical therapy when she was forced to withdraw because her symptoms became too severe to continue her coursework.

Emilee’s symptoms started approximately three years prior to her diagnosis and included swelling of her legs and feet, mood and behavioural changes, a tremor in her right hand, muscle cramps, dystonia, slurred speech, and balance loss. Emilee and her family were determined to find the answers to her symptoms. Every doctor she went to said she suffered from anxiety and depression, however, none of the different antidepressants she was prescribed helped her symptoms. Emilee and her family kept looking for answers and asked for a neurologic workup several times during the year prior to her diagnosis.

The final push for a neurologic workup came from her very own graduate school professors. Emilee’s doctor finally ordered an MRI, which revealed the “panda face,” and put her on the path to a correct diagnosis. The MRI’s “panda face,” lab results, and the presence of Kayser-Fleischer Rings in her eyes solidified the diagnosis.

Just one month after Emilee’s correct diagnosis, she was hospitalized, where she spent 12 gruelling weeks on the rehab floor because she could no longer swallow, due to the neurologic damage in her brain. After having a feeding tube placement surgery, she was left with only a single voluntary movement – the ability to blink her eyes; blinking became her means of communication. Her life on the rehab floor and the next five years consisted of lots of physical therapy, occupational therapy, and speech therapy.

Emilee’s hard-work and fierce determination, accompanied by the support of her family, friends, caregivers and therapists, has allowed her to do things most doctors said she never would again.

Emilee’s goal in life is to bring awareness to Wilson’s Disease, to prevent others from having to go through what she did.

 

 

 

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Daniel Rubayo warrior

Dr.Daniel Rubayo

My story is, honestly, one of pure luck. My name is Daniel and in the picture you can see my wife Melissa and I. We got married in June of 2018 and we're now expecting our first daughter Lucía María. So why luck? See, I was diagnosed with Wilson's disease in 2012, when I was 22 years old, going through my second year of dental school in Puerto Rico. I had no symptoms... none whatsoever, and I had lived a life without worry, eating EVERYTHING that as a WD patient I should avoid, multiple times a day, multiple days a week. So you may ask yourself, why did I get a test for WD? Well, that other story started about a year earlier when my younger sister was rushed to the ER because she had fainted and had an itchy head. She wasn't diagnosed with WD until like about 4-5 months later. Needless to say, with all the strange symptoms she had, at some point my mother thought we were going to lose her. After the diagnosis, she took penicillamine for some time and got so much better so quickly, it was like a miracle. She is now in Zinc therapy.

Me? I went straight to Zinc, 3 times a day, had to stop eating a couple of foods and get labs every once in a while. She often reminds me that I owe her my life, and I kind of do haha. We're both pretty healthy individuals and live quite a normal life so far.

Having WD never really impacted me much, I was able to adapt quickly and easily to everything the doctors recommended. It wasn't really until 2015 when I went to the WDA Annual Conference that I realized how lucky I really was, and it was an experience that marked me. I met people that were having to deal with much much worse things than taking a pill 3 times a day. I'd lie to you if I told you that I was able to hold my tears back. It was really tough to imagine myself in their shoes. My life, as I know it, would've been upside down if I had some of the symptoms that I saw manifested in some at the meeting. For example, I've chosen a profession that requires fine motor skills and steady hands. Practising dentistry would've been impossible, and after so many years of education and sacrifice, that would've been just a little bit frustrating. Then I decided to help, however I could. With my busy schedule and ongoing education, I decided to enroll myself as a support contact for the WDA, that was the least I could do. To my surprise I have received emails and calls from people seeking help and guidance, and I have done my best to provide them, and it's been very gratifying. Since then, I haven't done much more than that. This year I'm trying the Big WOW because I believe it is
something small for me to do that could do some good for the Wilson's Disease Association and all of its members, the research they support and all of the patients that need the WDA to continue doing what it is doing for years to come.

 

 

 

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Jean P. Perog
Jean P. Perog President
Jean is a retired CPA living in Merritt, British Columbia. She has WD and has a brother with WD. Jean also served as Treasurer of the Wilson Disease Association and is an active volunteer in her community.
Carol Terry
Carol Terry Vice President
Carol was diagnosed in 1973 with WD and is a retired US Government accountant. She helped found the WDA in 1983 and served as its President for ten years. She also served as Vice-President, Treasurer and Secretary.
Mary L. Graper
Mary L. Graper VP Scientific Affairs
Mary has over 25 years experience as a volunteer leader, and is recognized for her creativity, organizational and leadership skills. She holds a B.S. degree in Education from the University of Wisconsin-Milwaukee.
Jeanne A. Friedman
Jeanne A. Friedman Secretary
Jeanne is a Licensed Clinical Social Worker and has WD. She has been with Wilson Disease Association since 2013 and lives in Kew Gardens, New York.
Stephen Walsh
Stephen Walsh Treasurer
Stephen lives in Boulder, Colorado and has a daughter with WD. He went to college at the University of Colorado and graduated with a B.S. in finance.

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