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Andrea H: Mother of Son with Facial Morphea

I am not sure how he will feel when he is older.

Blue AHydrangea by Sherrill Knaggs, ISN Artist I am the mother of a six-year-old boy called Alex who is suffering from facial morphea scleroderma.

He has a large patch on the left side of his face under his chin which is slowly changing the shape of his face and jaw. He also has a patch in his hair above his left ear which has turned his hair white. He has a definite underdeveloped left side of his face which is more apparent when he is asleep.

He is currently on methotrexate weekly and has been in hospital twice for infusions of steroids.

He is a happy little boy who at the moment is not affected by his disease. I am not sure how he will feel when he is older.

To Contact the Author

Email: [email protected]
Story edited 06-15-07 JTD
Story posted 07-25-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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

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!

Go to Andy Markman: Systemic Sclerosis

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

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