BURGAW, NC (WECT) - The last two years have been anything but good health for a woman living in Pender County.
Since 2010, Betty Hughes has spent over two months in the hospital. She suffered from congestive heart failure, nearly 40 blood transfusions, kidney failure, problems swallowing and the loss of several teeth.
Those trips to doctors and month long hospital stays have finally led to a diagnosis of a rare medical condition - Scleroderma.
Unfortunately, not much is known about Scleroderma, but those who suffer from it know it is a life-changing disease.
"Scleroderma is a hardening of the skin and it is broken down into two categories: unlimited, for the outside of the body, and systemic, for all of the body, and that is what I have," said Hughes, who got the news in 2011.
Scleroderma is a rare autoimmune tissue disease. In the systemic form, the skin and organs are involved, including the heart, kidneys and lungs, among other parts.
But it is rare. Doctors estimate there are about 49,000 people in the United States with it.
Unfortunately, the cause of Scleroderma is not known, but it does affect women, usually in child bearing age, more frequently than men. And it can be hard to determine if a person has the illness.
"Most of the time when patients work their way into a consultation, specifically for Scleroderma, they have one of three conditions. Your skin changes, where it begins to harden, you have a condition called Raynaud's Disease, where you have circulation problems and the hands turn blue or purple when they get cold, or they start to get puffy, swollen hands, which makes someone think of arthritis, but they look a little bit different in patients with Scleroderma," said Doctor Mark Harris of Carolina Arthritis.
Because there is no cure for Scleroderma, it can only be treated with a variety of medicines.
Before she got sick, Hughes was a nurse in the operating room at New Hanover Regional Medical Center. She no longer can work, has a lack of energy and is on oxygen.
Hughes is using her time to spread the word about Scleroderma, and despite no cure right now, she is optimistic that one will be found someday soon.
"I just have faith in God that one day they will find a cure, and I just hope that day will be tomorrow," said Hughes.
June is Scleroderma awareness month, and Hughes is spreading the word about the rare disease that has taken over her life. She is also hoping to get a local support group organized in our area for Scleroderma patients.
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