Sandra Raia turned 74 on June 1.
For most people, a birthday is a happy occasion. But for Raia, June 1 also is the start of Scleroderma Awareness Month, and Raia has suffered from scleroderma for many years, a painful debilitating disease that has made life more and more difficult.
Raia’s daughter, Michele Dupey, a former spokesperson for the Hudson County Freeholders and a resident of Jersey City, searched for a meaningful present she could give her mother. She decided to participate in a fundraising walk to help find a cure for the disease.
“I wanted to do something that showed my mother I cared about her,” Dupey said.
Although Raia was a resident of New Jersey for many years, the cold weather drove her west to Texas in the late 1990s, where more moderate temperatures allowed her to live in less pain. Recently, Dupey and other family members brought Raia back to New Jersey as the disease progressed.
“It is horrible,” said Dupey. “She really can’t take care of herself. She can’t live alone. She can’t cook or clean, and it is difficult for her to do laundry, make a bed, or go shopping.”
Raia, like many people who suffer the disease, didn’t know at first what was happening to her. It struck about 10 years ago. Scleroderma is an autoimmune disease of the connective tissues that affects an estimated 150,000 to 500,000 people. It is caused by an over-production of collagen – a substance that creates elasticity in the skin. Raia said that repeated abnormal swelling on her fingertips caused her to lose her fingerprints. Her fingertips are often cracked and bleeding.
“She finds it hard to grasp anything,” Dupey said.
There are two types of scleroderma – localized, which only affects patches of skin, and internal. While Raia has symptoms of the first, she actually suffers from the second type.
“My mother has internalized scleroderma – which affects the body’s major internal organs, such as the lungs or the heart,” Dupey said.
The disease attacks and eventually shuts down vital organs, so that a person struck suffers a slow and extremely painful death.
As far as anyone can tell, the disease has no cure, and even treatment has a limited effect, often designed around the variety of an individual patient’s symptoms. Traditional anti-inflammatory drugs including steroids have had only limited success, although new versions may be slightly more effective. For the most part, doctors treat the symptoms, not the disease.
In late 2003, Dupey and family members had to bring Raia back in order to provide closer care as Raia became less and less functional.
“She has back problems with spinal disintegration,” Dupey said. “We saw the decline and asked my mother to come back east. Texas is not as generous in providing support for people like her as New Jersey is. But even if they did offer nurses’ aides, it would be difficult for us to negotiate for her over the telephone. In a real sense, Mom doesn’t have much time left.”
Helpless to help her mother except to comfort her as best she can, Dupey has joined the effort to raise money for research that may find a cure that will help other people in the future.
“This is to show my mother I care,” Dupey said.
Wants to raise $2K
Dupey is seeking to raise $2,000 for the Scleroderma Foundation, a not-for-profit organization that offers support for victims and education about the disease, and enlists researchers in an effort to find a cure.
Dupey will take part in the “Stepping Out to Cure Scleroderma” National Walk-A-Thon Sunday, June 6, 2004 in Overpeck Park, Leonia. All proceeds will benefit the local Scleroderma Foundation of the Tri-State, Inc. Dupey is seeking sponsors or donations made in her name.
Those interested can offer support at the website: http://www.justgiving.com/PFP/Witty-Funds or mail donations in her name to: Scleroderma Foundation/Tri-State Chapter, 62 Front St., Binghamton, NY 13905. Checks should be payable to Scleroderma Foundation.