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Khai: Mother of Diffuse Progressive Systemic Sclerosis Patient

In August, 2001, my daughter was living in Germany with her husband and two girls, then ages four years old and seven months old. She began calling me with concerns of swelling hands that always had a bluish hue. I am a registered nurse, so I immediately suspected Raynaud's syndrome and possibly lupus. I encouraged my daughter to go to a physician for a complete checkup.

After four months of military emergency room visits for joint pain, generalized weakness and malaise, we were exasperated and frustrated due to an inability to diagnose the problem.

In January 2002, my daughter was finally referred to a rheumatologist. The doctor took one look at my daughter and told her that she had scleroderma. The doctor immediately prescribed Lisinopril, which is an ace inhibitor that helps to control blood pressure and subsequently protects the kidneys from the disease. The doctor in Germany also had my daughter shipped home due to the severely cold winters in Germany being contraindicated for patients with scleroderma.

From that time until now, scleroderma has dictated our lives. The disease has attacked all lobes of the lungs on the right side. All of her skin is affected as are her joints. She is constantly in pain and has to take strong pain medications . She hascontractures of both arms and legs. We are now trying to heal an ulcer on her coccyx. She has been hospitalized for pneumonia, acute renal failure, pancreatitis and upper bowel obstruction. She is on several other medications, such as prilosec, prednisone, and cyclophosphamide.

I praise God for his infinite mercy because she has recuperated from all of the conditions for which she was hospitalized. We take each day one day at a time with constant prayer and faith.We are keeping the faith that God will heal her.

I would like to hear from others who have the progressive form of this disease.

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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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