published Monday, November 4th, 2013

I've got what? Little-publicized disease scleroderma can forever alter your body and life

  • photo
    Pam Simons, of Cleveland. Tenn., is one of fewer than 500,000 people in the United States diagnosed with scleroderma, a painful hardening of the skin and organs. She belongs to a new scleroderma support group that has formed in Chattanooga.
    Photo by John Rawlston.
    enlarge photo

FAST FACTS

• Fewer than 500,000 people in the United States have scleroderma.

• Some experts report that six out of seven patients are women.

• The most common age span for scleroderma to develop is between 35 and 50. But young children and older adults can get the disease.

• Although scleroderma does not seem to run in families, it is common for family members to have other autoimmune diseases like thyroid disease, rheumatoid arthritis or lupus.

• Blacks and American Indians generally have more severe scleroderma than Caucasians, which suggests a hereditary component to it.

• Environmental factors could also put people at risk for scleroderma. For example, men exposed to silica appear to have a higher risk for developing scleroderma and certain drugs are capable of causing a scleroderma-like reaction.

Source: The John Hopkins Scleroderma Center

SUPPORT GROUP

For more information about the Chattanooga Scleroderma Support Group, call Linda Chaff at 423-886-6000 or 423-718-8873 or email to linda@chaffco.com.

Only a couple of years ago, Pam Simons had no problem keeping up with her two grandsons.

But now the 58-year-old says she no longer has the energy to play with the boys, ages 10 and 3. In fact, her fatigue has robbed her of the ability to do many of the things she did two years ago.

The problem? Scleroderma.

Little-publicized because fewer than 500,000 people in the U.S. have it -- and most are women -- scleroderma is a chronic autoimmune disease that can tighten and harden the skin, blood vessels, internal organs and digestive tract. The symptoms range from mild to severe.

And there's no cure.

In some people, like Simons, it affects only the skin.

"It's all over my body but not internal, thank goodness, because that can be very serious," she says. "It has affected my mobility and speech, but mostly it's fatigue I'm dealing with. I stay tired, and not getting around and doing things like playing with my grandchildren are big changes for me. I can't even clean my house. The disease has changed my whole life."

Medications offer little relief, she says.

"You can only take medication for the symptoms -- anti-inflammatory and pain medications," she says. "I've had no improvement since the diagnosis two years ago. I've learned to live with it."

Dr. Richard Brackett, a rheumatologist in Chattanooga, says there are a few medications that help control the symptoms, but there is no U.S. Food and Drug Administration-approved drug for treatment.

"It is unusual for this disease to go away, but it can spontaneously reverse," he says.

Along fatigue and thickening of the skin, he says, other scleroderma symptoms include Raynaud's syndrome, which restricts blood flow to the fingers and toes, causing them to turn white, gastroesophageal reflux and swallowing problems, shortness of breath if the lungs are scarred and muscle weakness. However, you can have these symptoms and not have scleroderma.

Simons says most people she knows have never heard about scleroderma. And because of that, Simons, along with other people in the area who have the disease, are becoming active in the Chattanooga Scleroderma Support Group.

"The support group is good because we can all talk about our symptoms and what we're doing to make our lives better and help each other," she says. "The group is also for our families, because we couldn't get through this if it weren't for our families.

"Even though my diagnosis was two years ago, I still get down and out about it. It sure helps to talk to somebody else who's going through the same thing."

The group was originally organized by Linda Chaff of Signal Mountain, who was diagnosed with scleroderma in 2011. She started the group on the advice of her doctors, who said scleroderma sufferers and their families benefit from having someone to talk to about the disease.

"Our group includes members from Chattanooga, Cleveland, Dalton, Ooltewah, Rossville and other surrounding towns," Chaff says. "(It) is a place to give and receive emotional and practical support as well as to exchange information. One of our goals is to be a valuable resource -- a place where people can share medical information, educate others or just talk through situations.

"We talk with other folks who are like ourselves -- people who understand what they're going through and can share the type of practical insights that can only come from firsthand experience."

Amy Inbody moved to Chattanooga from San Jose, Calif., shortly after she was diagnosed with scleroderma in 1997. She moved here to be near her sister and her family. The symptoms of the disease began in her hands, which is the same thing that happened to Simons.

"My symptoms started with swelling of the hands and then the feet. They became really swollen," the 61-year-old Inbody says. "I was stupid because I didn't go to the doctor right away. I was in retail and I thought the swelling was from standing, but it was happening every day.

"Finally, about a month later, I went to the doctor and I was diagnosed right away with scleroderma."

  • photo
    Pam Simons says scleroderma makes her hands especially painful. Some patient's symptoms include such a severe tightening that their hands become clawlike.
    Photo by John Rawlston.
    enlarge photo

Though the disease manifested itself mostly on her skin -- she says scleroderma looks sort of like a scab -- Inbody suffered a serious side effect one year after her diagnosis -- renal failure.

"My kidneys were shutting down," she says. "After I got out of the hospital, I had to take off from work for five months. Because it could happen again, I'm still taking medication for my kidneys."

Because scleroderma is so rare, "it's important to find a rheumatologist who's familiar with it," she says. "There's a lot of research about it going on, especially stem cell research."

Prior to her diagnosis, she was very active.

"I was always on the go. I did lots of traveling. The disease brought me to my knees. I've been on disability since 1999. Scleroderma happened and everything changed. After being a career woman all my adult life and to be told you can't work any longer was crushing. Today, I try to do a lot of volunteer work, but I still have a lot of chronic fatigue."

Her skin has lost most of its scleroderma symptoms, she says, so her hands are about the only outward sign that she has it.

"They're kind of claw-shaped."

A support group can be one of the best things to happen to someone with scleroderma, Inbody says.

"There are people in this town right now who are scared to death, wondering what is wrong with them," she says. "We want them to know other people have gone through what they're going through, and we want to help one another."

Chaff, who was diagnosed with diffuse, systemic scleroderma, says the connective tissues in several parts of her body, including skin and internal organs, have been affected.

"I was never sick a day in my life except for an occasional cold and sailed through life believing if I took vitamins and fish oil and exercised and ate healthy and lived a positive life personally and spiritually, then everything would be great," says Chaff, who declined to give her age.

But when her wrists and ankles began swelling, itching and became painful, she knew something strange was happening to her body.

"I thought I had been bitten by a spider," she says. So she self-medicated with homeopathic medicines, thinking it was an inflammation that would go away.

It didn't go away.

About two months after she noticed the symptoms, Chaff was diagnosed with scleroderma. When her stomach began bleeding from the disease, she was hospitalized.

"I went through a period of being very ill," she says. "I was severely anemic and was hospitalized to receive blood and iron transfusions."

It was several months before it was stopped, she says.

"I still have regular labs, take medicine and exercise two to three times a week, which helps tremendously in sustaining mobility and flexibility and a positive spirit," she says

She began the support group because she wanted to learn more about the disease to help others, she says, "but surprisingly, I have been the one who has benefited the most."

"I have met some incredible folks and have made friends with so many people and their families. When asked about how I got scleroderma, I find myself explaining it by saying that it was just a card I was dealt and there's no way of explaining it."

Contact staff writer Karen Nazor Hill at 423-757-6396 or khill@timesfreepress.com.

about Karen Nazor Hill...

Feature writer Karen Nazor Hill covers fashion, design, home and gardening, pets, entertainment, human interest features and more. She also is an occasional news reporter and the Town Talk columnist. She previously worked for the Catholic newspaper Tennessee Register and was a reporter at the Chattanooga Free Press from 1985 to 1999, when the newspaper merged with the Chattanooga Times. She won a Society of Professional Journalists Golden Press third-place award in feature writing for ...

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