My journey with Wilson’s Disease started when I was only 7. I was about to go to elementary school and my mother decided to examine my health just to be sure I’m all healthy and ready to study. But here’s something that changed my life forever.
My biochemical analysis was terrible. When the reference value of AST/ALT is around 30–40, mine was around 400–450. Ever since then the lifestyle of my family wasn’t the same.
While having a lot of concerns, my mother started looking for the particular reason that would explain why I had no symptoms as my health wasn’t at its best condition. A lot of doctors in my homeland talked about hepatitis or even HIV, because the majority of the diagnostics showed that my liver was on stage 3 fibrosis. Without any understanding my mother had started browsing through the Internet to find out what could it be. Luckily, my lifelong paediatrician assumed that it could be Wilson’s Disease.
And here’s the thing. It was almost the end of 2017. I’ve spent the biggest part of my school days wandering within the walls of different clinics and nobody could clearly tell us what was wrong with me. When my mother started her research on Wilson’s Disease, she found out that there were approximately 600 people out of more than billion people who struggle with the disease. Russian medicine could not afford diagnostics for people with rare conditions or ambiguous symptoms, that’s why a lot of people remained undiagnosed or simply with no chance to live because of lack of medical treatment.
The biggest complication for me was to avoid eating a lot of food that includes copper, such as tomatoes, some types of fish and nuts. However I had no idea whether I’m going to live or die. My toddler’s brain thought I was suffering from something hardly curable like cancer and counted on every single day as last.
Besides my own concerns, my family wrote a letter to Mayo Clinic asking if there’s any possibility to make an appointment. Happily, they answered and sent us an invitation for checking up offering full diagnostic. My grandmother, who is by sheer luck a gastroenterologist, also went with us in case we need some help with analysis and procedures.
At the start of May ’18 my family and I were in Rochester, Minnesota, and for the major part of the trip we were staying in the hospital going from one doctor’s appointment to another.
When all of the signs were showing that I indeed have Wilson’s Disease, my doctor offered us a liver biopsy to solidly confirm whether I have the disease or not.
On May 17th, which is the day before my birthday, I had to prepare for the upcoming biopsy, not knowing what will happen to me. Because of my wonderful surgeons and doctors, the stay-care in hospital was amazing and felt like little health-promoting days. At the end of the day I was ready to discharge from the clinic.
On May 18th I turned 8. It is the exact age of me finding out I have Wilson’s Disease. It’s been half of my life since I’ve been living with that knowledge.
At the end of May ’18 I started taking medicine (trientine) and ever since then, following the prescription I’ve been taking it daily 3 times a day. Honestly, I don’t remember my life before the diagnosis, but I have no regrets in what my life is looking like since I knew I have WD.
Right now, my analysis has gotten better and I can live fulfilling life without any concerns about my future.
Of course, it is important to hold your health accountable, but what is much more important in my case, is that because of the people around me and because of the awareness I could’ve had a chance to live a normal life.
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