Amanda Elsts
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 mat 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 gynecologist 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.
Emilia
Just 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 while 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 all I wanted to do was die at that moment. I was thinking of asphyxiating 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.
Kaelyn And Teagan Everham
My 14 year old daughter Teagan, shown in the photo, was diagnosed with Wilson’s Disease at the age of 8.
In the span of a year Teagan had easily fractured 3 bones so I asked our pediatrician to test her vitamins levels and test her for Lupus. Her first blood work came back with her liver enzymes in the 200 range. Two weeks later we ran the tests again and the enzymes were in the 300 range. We were sent to Seattle Children’s Hospital for an ultrasound which didn’t indicate a problem. Two weeks later we went back to Children’s for an eye exam but there were no rings in her eyes. A week later we went back for a liver biopsy which confirmed she had Wilson’s Disease and moderate damage to her liver.
Since being on Gluzin for the past 6 years and avoiding copper in her diet her disease is under control.
We are so thankful for a wonderful pediatrician who stayed on top of things and especially having Children’s Hospital and Dr. Hahn so near by.
Teagan is happily starting high school in September.
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