Lisa Hendricks was just seven years old when her parents noticed she was limping and couldn’t lay her hands flat on a table. She hadn’t complained of any pain, or showed any signs that the stiffness in her fingers was slowing her down. In fact, she had just started to play the piano and seemed to love it. Yet her parents knew something was wrong.
Suddenly, Lisa was unable to get up from a sitting position. Her parents rushed her to the doctor, who immediately recognized the symptoms of the linear
and morphea forms of scleroderma. Two months later, specialists at the University of California, San Francisco, confirmed the diagnosis.
And just like that, in the blink of an eye, Lisa had begun her life with scleroderma.
Lisa has recently finished college and is beginning her career as an elementary school teacher. She volunteers for her church, hangs out with friends and family, and still enjoys playing the piano. She just does it all with scleroderma.
Lisa first found the Scleroderma Foundation while she was doing research online about the disease and support groups that provide resources for patients. What she found in her research was life-changing.
“When you talk to other members of a Scleroderma Foundation support group, you know they understand what you are talking about. It’s very comforting,” said Lisa, who belongs to the Foundation’s support group
in Sacramento. “We get together once a month, but really a lot of us are in constant contact. It’s like I finally found where I belong.”
Support is a critical component of the Scleroderma Foundation’s mission, but it isn’t the only aspect that drives the organization. The Foundation educates patients, families, medical professionals and the public through awareness campaigns. The organization also works to raise much-needed funds for research to identify the cause, and ultimately a cure, for the disease. These components make up the Foundation’s three-fold mission of support, education and research.
“When you talk to other members of a Scleroderma Foundation support group, you know they understand what you are talking about. It’s very comforting. We get together once a month, but really a lot of us are in constant contact. It’s like I finally found where I belong.” – Lisa Hendricks
Because scleroderma is rare (it is estimated that the disease affects about 300,000 people in the U.S., 80 percent of whom are women), people who are newly diagnosed often worry that they are alone with the disease. While health care providers administer medical therapies to aid a patient’s physical wellness, fellow patients play a significant role in the person’s mental and physical health.
It is that reason why the Foundation’s nationwide network of chapters and support groups exist: to make connections with others living with the disease. Here, people can find a safe and welcoming place to share, to learn, to cry, and to laugh.