Baldwinsville To the editor:
You may have never heard of scleroderma. If you have, chances are you, a friend or family member has scleroderma. Approximately 300,000 Americans are diagnosed and there are still many looking for answers and coping with a variety of symptoms. If you are one of those it may be 3 to 5 years before a diagnosis is confirmed.
Scleroderma literally means “hard skin” however the disease is better defined as being characterized by a hardening of the body’s connective tissue. African-Americans are more frequently diagnosed and at an earlier age than other ethnic groups. Women with scleroderma outnumber men by about 4:1. Children can also develop scleroderma. It has no known cause, no known cure — not yet.
Scleroderma manifests itself in ways that are as unique as each one of us. Some have a less invasive form known as localized scleroderma others have the more severe form, systemic sclerosis. I’ve met people who have coped with the disease for more than 30 years and others that don’t survive more than a few. I’ve talked with and seen those newly diagnosed individuals start the arduous process of grieving for the loss of their health and many times their careers. I’ve heard stories from those who don’t know how to help their loved ones understand the overwhelming fatigue that limits them in so many ways. I hope that I help them on their way toward acceptance, finding the right health care provider and coping effectively. Some days, there are no words that help — they talk, we share tears and try to find some humor in the midst of their heartache.
I believe that more often than not, out of suffering and loss, much good comes. People rise above their own challenges to help others, volunteering to take phone calls and be a friend, participating in fundraisers and educational events; becoming active in support groups and giving what they can to raise awareness and contributions used to continue programs and fund research. We want them to know that they need never feel alone. It is through our awareness efforts that we seek out those that need our organization to improve their health and well-being. Scleroderma is devastating but even in our darkest hours, light can be seen shining through those who show understanding, empathy and compassion toward the victims of this disease.