Eliza Jaffe
Hello,
In the middle of my junior year of high school, I went to the doctor for a normal, routine check-up. I found out I had high blood pressure, which was rare for a 16 year old, but I had no other obvious symptoms. Over the next six months, after many doctors appointments and inconclusive test results, finally an MRI of my liver showed scarring and abnormalities. After an eye doctor confirmed my Kaiser-Fleischer rings, my gastroenterologist was pretty quick to realize I needed a liver biopsy to confirm that I have Wilson’s disease.
In six short months, I went from a healthy teenager, to a teenager who looks, acts, and feels healthy, but actually has liver fibrosis from a build-up of copper deposits. I am extremely lucky that my doctors investigated that high blood pressure number that never ended up being related to Wilson’s disease. If it had been swept under the rug I could have had liver failure a few years later. I am extremely lucky that I was both asymptomatic and had doctors that were able to find an accurate diagnosis quickly.
Many patients are not so lucky. Wilson’s disease is a rare illness that manifests in different ways for every person, and it can be difficult to diagnose. The life saving medications needed to treat Wilson’s Disease are not available in every country, and they are terribly expensive without financial assistance. I was very lucky to have the diagnosis and assistance that I did, but many others suffer with neurological or liver symptoms for years without a diagnosis or treatment.
I am writing this in hopes that we can raise awareness, fund more research for Wilson’s disease and hopefully make treatment more widespread and affordable.
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