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Moroni: Husband with Systemic Sclerosis

We have become depressed since we don't know what to expect from the illness.

My husband was diagnosed with this illness two years ago. It all began with a cardiac arrhythmia. I took him to a cardiologist who performed an echocardiogram, where he realized that his heart had some damage. He ordered a skin biopsy, which showed that there was excess collagen, which suggested an autoimmune disease. The cardiologist sent us to a rheumatologist, who at first said it couldn't be scleroderma, since there were no symptoms. He ordered special exams and they revealed that he had systemic sclerosis and it had affected his heart. He is under medication by the rheumatologist and the cardiologist. Sometimes his wrists and fingers hurt; he also sometimes has arrhythmias which are controlled with more medication. The rheumatologist says that this illness began about two years before he was diagnosed. It slowly and silently damaged his organs, and by the time we realized, they were affected.

My husband is thirty years old, when he was diagnosed he was twenty-eight, and I was pregnant. We have a child, he is one and a half years old. We have become depressed since we don't know what to expect from the illness and nobody who is going through the same due to the rare nature of the illness.

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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.