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Debbie B: Mother of Linear Scleroderma Patient

Australia

Pink Bow photo by Shelley EnszHi, my name is Debbie and my five-year-old daughter, Emily, was diagnosed with Linear Morphea scleroderma in July 2009. Emily started with a purple bruise-like mark on her tummy and inner leg, only on the right hand side. We thought nothing of it at first and thought it was a birthmark.

I became concerned when the mark started to grow and became very hard to touch. Emily had a scan and it came back as a thickening of the skin. She then got it all over her right foot and her pubic area.

We were sent to see a dermatologist who thought she may have morphea. Emily was sent to West Mead Hospital in Sydney, Australia, where she was examined by another dermatologist and then sent to see a rheumatologist.

To make a long story short, this has been a nightmare for my daughter. The disease is in her muscles and the right leg has stopped growing. She is on a steroid treatment and methotrexate, but nothing seems to be working as yet. I will keep you up to date.

Her right foot is 2 cm shorter then her left and she is always in pain. Emily has to have her foot put into casts because she is starting to walk on the outside of her foot. She will have a special boot made in March and she will have to wear it everyday to keep her foot straight.

Emily is a sweet beautiful kind little girl and I wish I could take this disease and free her to live a normal life. But that is every mother's wish not to watch there children suffer.

To Contact the Author

Debbie
Email: [email protected]
Story edited 01-04-10 JTD
Story posted 04-22-10 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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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