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Angela: Mother of Linear Scleroderma Patient

In spite of all the physical and emotional pain that scleroderma has brought her, perhaps she is more whole because of it.

For Mom PV by Shelley Ensz I have a sixteen-year-old daughter who was diagnosed with linear scleroderma twelve years ago. It began on her hip and spread to her lower limbs. Now she has a great deal of atrophy in one leg and foot.

She has gone through two surgeries to straighten toes and stretch the heel cord. She is an active teenager; she plays basketball and jogs occasionally.

However, she now deals with a great deal of pain when her leg goes into spasms. These usually occur in the evening while at rest, but may happen anytime and are quite painful.

We are in search of others who might share this problem and also some who may have solutions to help deal with the pain.

~ Update 6-19-03 ~

My daughter is now seventeen and in addition to her sport activities and schooling she maintains a waitress job.

She still has painful leg spasms but sometimes at bedtime she will take medicine for it, and that seems to help her to rest for the rest of the night, but even that takes a while to work.

I would like to offer a word of encouragement for others who share any painful disorder. Since my child has had this condition since the age of four, we have had several opportunities to pray over her. I can honestly say that even though her body is not whole, her spirituality certainly is.

In spite of all the physical and emotional pain that scleroderma has brought her, perhaps she is more whole because of it. Yet, as a mother who still witnesses her child in much physical pain, I am constantly seeking others to offer solutions that may help her.

To Contact the Author

Angela
Email: [email protected]
Story submitted 4-2-02
Story posted 4-20-02

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Juvenile Scleroderma
Linear Scleroderma

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 Angela K: Limited Cutaneous Scleroderma
 
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