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Ed: Father of a Linear Morphea Patient

This is the day where our worse nightmare got confirmed, my son was diagnosed with linear morphea.

Pink Hebe with Bumblebee by Sherrill Knaggs, ISN Artist My wife and I both worked in a military hospital in the Middle East and have enjoyed our free life together with our two active kids, Kier, age twelve and Erwin, age nine now.

My son Erwin and his brother are both active in karate class. One night after their practice, Erwin complained about pain in his knee joints. I thought it was just a pain inflicted by karate kicks during their sparring practice. Erwin was at the age of six during that time.

A month after the pain, we notice a spot coming from his ankle and as days passed, the scar started to climb up to knee level. This is when my wife got worried and started consulting our dermatologist. We were given wrong diagnosis and treatments and it seem that the damage started to become worse. We noticed muscle wasting had started and spots started to appear on his thigh and upper hand.

Finally, our dermatologist advised immediate biopsy and blood chemistry to be done in France. This is the day where our worse nightmare got confirmed, my son was diagnosed with linear morphea. We cried initially, but later decided to leave everything to the ultimate healer, God.

A series of medications, steroids and creams has been applied, but Erwin's case seemed to be worsening. When we consulted a different dermatologist we were even advised of UVA. We found out that it can help, but it could have a dramatic effect on Erwin's eye sight at a later age.

Without informing our dermatologist, we started applying a moisturizing oil on all the affected body parts (I studied reflexology at the same time so I can use it for the oil application). Without stopping, we started massaging his legs and arm with the oil in the morning after bath and in the evening before bedtime.

Erwin is nine years old now. We immigrated to Canada and his spots on his arms completely stopped showing progression on the affected skin. His deeply affected leg also seemed to improved. Spots on the other legs never continued though dark spots started to appear earlier.

Today, Erwin is a very active child doing regular sports like ordinary kids, though we do admit he has weakness in his right leg considering that the muscle size is totally different to the other leg. We never discourage him to do physical activities and treated him as a normal healthy boy. Diet also seemed to have influenced his recovery. We started educating him about the value of eating nutritious food. He even does the massaging of his legs whenever we are busy, otherwise he will come to us holding the bottle of his oil, reminding us to massage his legs and arm.

I do not claim any scientific proof about the healing power of moisturizing oils, but definitely I will assure anyone the healing power of faith.

I hope this story can help someone with the same case as my son.

Webmaster's Note: Localized Scleroderma Such as linear and morphea often fade in 2 to 5 years, even without any treatment, although linear will sometimes continue unabated, without adequate treatment, sometimes leading to permanent disability.

To Contact the Author

Email: Withheld by request
Story edited 10-13-06 JTD
Story posted 10-26-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Caregiver Stories
Juvenile Scleroderma
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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 Edith: MCTD

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