Scleroderma Foundation Names Volunteer Sisters Messengers of Hope

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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Rosa Johnson

Scleroderma, an autoimmune disease, causes an abnormal toughening of the area of the body affected, which can be anywhere from the skin to internal organs, which leads to a steady loss of function. The Scleroderma Foundation estimates that about 300,000 Americans have scleroderma, and the disease is known to affect more women than men.

A pair of sisters from Rochester have taken it upon themselves to give back to the local scleroderma community by actively participating in the Scleroderma Foundation’s support and advocacy groups, and fundraising initiatives. For their dedication, the foundation named them Messengers of Hope.

One of the sisters, Rosa Johnson, was caught in a fire back in 1998. She suffered burns on her face and right hand, and was admitted to the ICU for a week. When 2001 came, and it was time for a checkup, she was subjected to a number of tests, until in the summer of 2002, she was diagnosed with scleroderma. Today, she is an active volunteer at the Greater Rochester Scleroderma Support Group.

Her sister, Marilyn Sibley, is fortunate not to have the disease, but has compassionately devoted much of her efforts to assisting Rosa and the foundation. She has even become one of the foundation’s board of directors.

Rosa and Marilyn are scheduled to receive their awards during the Tri-State African-American Health Awareness Day on Saturday, October 11, from 8:00 a.m. to 5:00 p.m. at the Rochester Airport Marriott, 1890 Ridge Road W., Rochester. The event’s keynote speaker is Dr. Virginia Steen from Georgetown University.

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For more information and to register, visit the Scleroderma Foundation website. Registration fee is $10, which includes lunch.

In other scleroderma news, scientists are looking at Viagra (Sildenafil) as a potential treatment that can reduce the severity of skin lesions.