The skin transformations are the most noticeable, with a thickening and tightening and general loss of elasticity.
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There is a joint pain, numbness, and a sensitivity to cold in your fingertips.
It also can affect the internal organs, damaging lungs and kidneys and the gastrointestinal tract.
It's progressive. And there is no cure.
Scleroderma — which literally means hard skin — is a chronic autoimmune disease of the connective tissue. For some individuals, the disease is localized and the progression is moderate and manageable. For others, the disease is more aggressive.
Three years ago, Tori Anderson was diagnosed with the more aggressive form.
As lead vocalist with the local country band Possum Holler, Anderson has sung her share of songs about life's challenges.
Now, she wants to lend her voice to a cause that's very personal.
Anderson is hoping to raise awareness about her disease by organizing a Walk With Tori.
The event will be held on Sunday, Sept. 11, at the Performing Arts Pavilion in Doubs Woods Park in Hagerstown. Registration begins at 1 p.m., followed by the walk at 3 p.m.
Proceeds will go directly to research at The Scleroderma Center in Pittsburgh.
In addition to performing with Possum Holler, Anderson is disc jockey for country radio station 104.7 WAYZ. Her busy, fulfilling life was interrupted several years ago, she said, when she began noticing that her skin hurt and felt like it was tearing when she lifted her arms.
A visit to a rheumatologist resulted in a diagnosis for which she was unprepared. She had scleroderma and was told she had three to five years to live.
The disease causes Anderson's body to attack itself, leading to a host of problems — from constant pain and fatigue to breathing problems and weight loss.
Her health has also influenced a difficult decision, said her manager, Bill Clark. Possum Holler has decided to call it quits after 18 years.
In addition to Anderson, the band includes husband Michael Anderson, sister Cathy Moats, Greg Mills, Wes Moats and Greg Elwood.
"Three years ago, all of us noticed how bad Tori was struggling after the shows," Clark said. "All of us work day jobs and the travel and performances can take a toll. But she was physically trembling after throwing everything she had into the performances."
Following Tori's diagnosis, "the more we learned, the more concerns we had," Clark said. "The band collectively agreed to make this the final year of touring so Tori could fight the most important fight of her life. The group basically would do anything she wants. We're like brothers and sisters."
Clark said the band's final two scheduled performances will be at the Autumn Arts Festival in Hagerstown City Park on Saturday, Sept. 17, and the Apple Butter Festival in Berkeley Springs, W.Va. on Sunday, Oct. 9.The band hopes to do a regional indoor performance before the end of 2011.
Clark said there has been an "overwhelming outpouring of goodwill" since the public has learned of Tori's fight with scleroderma.
At the recent Clear Spring carnival, she was virtually covered up by friends and fans who wanted to get an autograph, have a picture taken with her "or just tell her they were praying for her," Clark shared.
Because the disease is relatively unknown and doesn't receive a great deal of research funding, Clark said Anderson decided to take on the upcoming fundraising event.
"I doubt you could find a better or more willing person to be the regional face of scleroderma," he said.
According to Clark, Walk With Tori also will include silent auctions, raffles and entertainment "so lawn chairs are recommended."
Walkers who donate $25 or more will receive a T-shirt.
Clark said the planning committee is hoping for a good turnout and people are welcome to walk as a team.
Because nearly 100,000 people in the United States are affected by scleroderma, including a number of people in the Tri-State area, "we need a timely cure," Clark said. "This cause is bigger than anything we have been a part of."