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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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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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