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Irina: Polymyositis

I remember being very scared.

My name is Irina. I am twenty-two years old. When I was nine I had my tonsils removed by surgery. Immediately after the operation I experienced muscle weakness and I had no strength to do everyday things as simple as walking or even getting up from bed. Being at that young age I didn't understand exactly what was happening.

My mom is a nurse so she immediately noticed something was very wrong. At that time I was still in hospital due to the operation so we went to see a neural specialist. At first they didn't know what exactly was going on. I was sent to do some tests including a biopsy on my arm.

I remember being very scared. My whole family was terrified. Finally, after weeks of tests, I was diagnosed with polymyositis. The doctors put me on corticosteroids therapy, combined with immunosuppressive medications.

One month in my therapy I gained 45 kilos. I was devastated. The doctors also sent me to physical therapy.

A year or two into my disease, I noticed my fingers were not growing as they should have. I told my mother and we went to see my doctor. As a side effect from the corticosteroids, my arms were weak, and to this day I get tired very easily. Things such as typing this story is very tiring.

I was sent to have my arms treated with liquid nitrogen, which is a very painful process, especially for an eleven-year-old girl. But it didn't result in success.

Now I am twenty-two and I have no muscle weakness or pain. My illness is now in remission. Now I only have problems with my immune system. I am very prone to allergies. I am allergic to milk and dairy products, cereals, nickel, eggs, dust, cats and dogs, and even bread.

But I learned to live with it. I am so happy that my ordeal with the illness is over. Now I have a happy life, a boyfriend for four years who is very supportive and understanding, and a loving family. I am studying to be an English teacher. I also have a part-time job, and a lot of friends. I guess all's well that ends well.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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