Joey Lynn Barlow’s pain began slowly. At first, there were some aches here, some fatigue there. But the pain quickly grew to a thundering avalanche of misery every hour and every day.
Barlow, a Chester County-based single mother of two boys ages 14 and 12, bounced from doctor to doctor for an answer. She was only 38 years old and active—she had recently run in her first 5K race—so why, she wondered, was she feeling twice her age?
A litany of more than 40 blood and diagnostic tests followed over the course of a few months: CT scans, X-rays, colonoscopy, upper and lower GIs, complete blood analysis—the works. Was it Lyme disease? Rheumatoid arthritis? Lupus? Muscular dystrophy? Multiple sclerosis? ALS? Just what was at the root of her pain?
And then one day, in May of last year, Barlow answered her telephone and found out.
“‘I got your test results back,’” she remembers her doctor saying. “‘You have scleroderma.’”
Barlow’s mental pain erupted. Because she had researched all the possibilities as doctors searched for a reason, she was all too familiar with scleroderma, which is a rare, progressive, incurable and possibly fatal autoimmune disease in which a person’s immune system attacks the soft tissues, resulting in inflammation and damage.
Scleroderma comes from two Greek words: sclero, meaning hard, and derma, meaning skin. According to the American College of Rheumatology, 12 to 20 new cases of scleroderma per million are diagnosed in the United States each year. Approximately 300,000 Americans are currently battling the disease.
Scleroderma, which is more common among women, can be either localized (meaning it affects certain body parts) or systemic (affects all body parts), which is the type that ails Barlow.
Systemic scleroderma hardens and thickens the connective tissue that supports skin and internal organs, causing pain and/or swelling in the muscles and joints. It affects blood vessels and major organs, such as the heart, lung and kidneys. The disease typically targets those between the ages of 25 and 55. When Barlow was diagnosed, her age was almost exactly in the middle of those parameters.
“When doctors told me they think it might be rheumatoid arthritis, lupus or scleroderma, scleroderma was the one I didn’t want,” she says.
But scleroderma is what it was. Barlow suddenly became Dorothy from “The Wizard of Oz,” her world spinning violently out of control.
“I had scleroderma,” she says. “I was panicking. I knew what it was and I knew what could happen to me. I didn’t know what to do or where to turn. I needed something or somebody to help me.”
Barlow found her something and somebody at the Scleroderma Foundation Delaware Valley Chapter, which is based in Cherry Hill, N.J. Soon after, the world that was spinning so wildly out of control finally began to slow down and take on some semblance of order.
“Finding that foundation was a godsend,” Barlow says. “They knew what I was going through, so they knew what I needed. They sent me information on the disease that was so easy to understand. They also hooked me up with reliable links online and with an online support group where once a week people just like me discuss what we’re all going through. One doctor told me I should take Tylenol; that’s what he thought about the disease.
“If I didn’t find the scleroderma foundation, I don’t know what I would have done.”
Knocking on Doors
The Scleroderma Foundation Delaware Valley Chapter was founded in 1988. It serves eastern Pennsylvania, southern and central New Jersey and Delaware. Its mission is to help raise funding for research on the cause and treatment of the disease; help patients and their families cope with the disease through mutual support programs; and educate patients and their families, medical professionals and the public through meetings, literature and public awareness programs.
“We are here to help scleroderma patients and their families with whatever they need,” says Madeline Quarto, board member of the Scleroderma Foundation Delaware Valley Chapter. “When people get diagnosed with scleroderma, they have to know that our foundation is a place they can come to where people know what they’re dealing with. … It’s also important for us to raise awareness. It’s such a rare disease that not many people know about it. It’s not like Susan G. Komen and breast cancer [or] Alex’s Lemonade Stand—diseases that people know all about.
“Our foundation conducts support groups; we have a Facebook page and a website. We educate the public on how horrible this disease is, and we have to educate the medical community. We knock on doctors’ doors, attend conferences where we register as speakers, we get scleroderma doctors to speak at conferences, we reach out to hospitals where seminars are being held, and we place articles in medical journals. We need to get the word out.”
Quarto has been on the board of the Scleroderma Foundation Delaware Valley Chapter for two years. But she arrived knowing full well the life-changing effects of the disease.
“My mother had scleroderma for 10 years and died from it two years ago when she was 70,” Quarto says. “It affected her lungs. It was really hard to watch her go through that.
“It took doctors five years to diagnose her. You go to a doctor who specializes in something and he weeds that out. Then you go to the next doctor and the next one. Part of the problem is that doctors aren’t talking to each other. It gets harder and harder to connect the dots. It’s part of the reason scleroderma is so difficult to pinpoint. … And we need more funding for research to learn more about it the disease. There just isn’t enough. That’s part of what we do at the foundation.”
Earlier this year, a bill entitled The Scleroderma Research and Awareness Act was introduced in the U.S. Senate and House of Representatives, calling on the government to expand research and awareness activities of the National Institute of Arthritis and Musculoskeletal and Skin Diseases and the Centers for Disease Control and Prevention with respect to scleroderma. The estimated total annual economic impact of scleroderma in the United States is in excess of $1.5 billion.
The word about this dreaded disease will continue to be trumpeted by the Scleroderma Foundation Delaware Valley Chapter. The foundation will do so at Scleroderma Awareness Night at the Lakewood BlueClaws’ minor league baseball game in Lakewood, N.J., on Aug. 21, and at the 22nd annual Stepping Out to Cure Scleroderma awareness and fundraising walk along Boathouse Row in Philadelphia on Oct. 9; and at the Tri-State and Delaware Valley Joint Chapter Forum in Somerville, N.J., on Oct. 15. Also, the foundation will march for the second time in the Philadelphia Thanksgiving Day Parade this November.
Joey Lynn Barlow was approached last month by a co-worker, whose 22-year-old daughter was recently diagnosed with limited scleroderma.
“She needed some help,” Barlow says. “The first thing I told her was to call the Scleroderma Foundation Delaware Valley Chapter.”
Barlow also told the co-worker not to hesitate to contact her whenever she or her daughter feels the need. Barlow says the co-worker is not a close friend. But now, given their common battle, they’re likely to bond like family.
Phil Gianficaro is an award-winning writer based in Doylestown.
Scleroderma Foundation Delaware Valley Chapter
385 Kings Highway North Cherry Professional Building
Cherry Hill, NJ 08034
Website: www.scleroderma.org/chapter/delaware_valley
Contact: Christine Gaydos, executive director
Toll free: 866-675-5545
Local: 856-779-7225
Office hours: Monday through Friday, 9 a.m. to 5 p.m.
E-mail: DVchapter@scleroderma.org
