The Villages Daily Sun

THE VILLAGES — It is hard to imagine there being a silver lining in the clouds when a person discovers they have a chronic and possibly deadly disease, but Carol D’Angelo has managed to find one anyway.

In 1987, she was diagnosed with scleroderma — a condition she never had heard of before — and doctors told her she might not have long to live.

Scleroderma, meaning “hard skin,” is an autoimmune disease caused by the overproduction of collagen (a connective tissue) in the body, which causes hardening of the skin and internal organs.

It can affect people of all ages and there is no cure. The symptoms and effects of scleroderma vary widely from person to person, but they can range from mild to life-threatening.

In D’Angelo’s case, scleroderma has caused hardening of the tissues in her lungs and is now causing problems with her heart, but she remains optimistic.

“In the beginning, I thought I would be dead in 10 years,” the Village of Liberty Park resident said.

But it has been more than 20 years, and D’Angelo not only has survived having scleroderma, but she and her husband Ernie also have gotten involved in spreading awareness of this little-known disease.

Getting involved

A year after Carol was diagnosed, the couple got involved with the United Scleroderma Foundation (now the Scleroderma Foundation) and Ernie became a member of the board of directors. Through the foundation, the D’Angelos participated in fundraisers in New York and New Jersey and helped raise awareness.

Through their involvement with the foundation, Carol found her silver lining.

“Had I not gotten sick, there are such wonderful people that we never would have met,” she said. “Sometimes the worst situations bring out the best.”

When they moved to The Villages, they decided to get reinvolved on a local level with the Scleroderma Support Group of Lady Lake.

“It’s really good for us all to get together and talk it out,” said the group’s founder and facilitator Jean Clark of the Village of Woodbury. “We’re a happy, progressive group. We’re here to support each other.”

June is Scleroderma Awareness Month, and Clark said part of the group’s mission is to spread awareness and educate people about scleroderma.

At the meetings, members share information on scleroderma studies, new treatments and therapies, and new medications they have discovered. But the primary goal of the group is to provide a place of support and understanding for members.

Since scleroderma is not a well-known disease, Clark said it is important for people with the condition to have a place to go where they can talk to others who know what they are going through.

“You don’t feel so alone and isolated,” she explained. “It always helps to share. It’s not good to isolate yourself.”

Finding understanding

During the discussion period at the end of the meeting, group members have a chance to vent their feelings of anger, frustration, fear and sadness. And through it all, they keep their senses of humor, often laughing about their problems with each other.

One member talked about how upset she was when someone criticized her for using handicapped parking because she doesn’t appear to be physically handicapped or ill. She said her lungs and heart are damaged by scleroderma, which means she cannot walk very far without causing severe stress to her body.

Carol sympathized, and said she also has faced criticism from people who don’t understand why she is considered handicapped.

It is moments like this that are important for the people in the support group, Ernie said. “They really need to talk.”

He, like many of the member’s spouses, comes to the meetings with Carol to lend his support, and he also finds some support there, too. He said it can be frustrating and upsetting for loved ones who don’t know how to help their spouses, friends or family members when they are diagnosed with scleroderma.

“Originally, it was extremely frustrating because you want to help. You want to do something,” he said, adding, “I’d rather have it myself.”

He said it is nice to know that others feel that way, and he is not alone.

“I’m not the only person who’s upset. You learn how to deal with it,” he said.

The Scleroderma Support Group of Lady Lake will resume meetings in September. Meetings are 1-3 p.m. on the first Wednesday of every month at The Villages Regional Hospital’s East Campus at 1501 Bella Cruz Drive. For information, call Jean Clark at 753-9500.

For information about scleroderma, visit scleroderma.org.

Caroline Klapper is a reporter with the Daily Sun. She can be reached at 753-1119, ext. 9018, or caroline.klapper@thevillagesmedia.com.