Hi, my name is Maliea and I'm 9 years old living in Brisbane and I have been diagnosed with Scleroderma. 🌻
Late last year, my doctor sent me for a lot of tests. It was then I was told that I had Scleroderma and precocious puberty. It was important that my precocious puberty was dealt with immediately so that my treatment could start before it was to late.
My scleroderma journey started with numbness in my hands and toes, headaches, joint pain, changes in my skin and being constantly tired. Unfortunately, in the past few months I have started choking and having difficulty swallowing and unexplainable abdomen pain and burning of the skin sensation.
In recent blood results and other tests, they found a heart condition and told me that my levels were twice the amount they usually see in most adults with autoimmune diseases. So now I'm on track to see a rheumatologist and cardiologist.
Unfortunately that isn't the end of my story, today further bloods have found that i may have Sjogrens, Lupus or Primary Bilary Cirrhosis.
My family and I are extremely pleased that we found a doctor who listened and was determined to find answers for me. We are pleased to have found a support group for Scleroderma, so thank you for reading my story.
Written by Maliea, November 2020, published with permission.
Scleroderma Queensland Support Group