Lindsay Weierbach was an active Lancaster fifth-grader, chasing soccer balls and preteen dreams.
But when she was diagnosed with a frightening autoimmune disease affecting mostly adults, her youth was interrupted.
Ironically, it all started with a cold-weather soccer match, when her hands and feet ached and turned purplish-black.
At first, doctors said she had systemic sclerosis, or scleroderma, a chronic, incurable and sometimes fatal rheumatic condition affecting organs and connective tissue.
But Dr. Sergio Jimenez, a scleroderma specialist at Thomas Jefferson University Hospital, Philadelphia, amended the diagnosis to Raynaud's phenomena. With RP, abnormal spasms of blood vessels cause discoloration of fingers and toes after exposure to temperature change. Stress can also be a factor.
" 'Scleroderma' means 'skin thickening,' and I had no evidence of this ... in any of my organs," Lindsay says.
But on the downside, tests also confirmed she carried the antibody for scleroderma, which means she could develop the disease.
"It was a lot for a kid to take in," says her father, John, a prosthodontist, who confesses it was also initially overwhelming for him and his wife, Kathy.
"The hardest thing was learning to live with not knowing," Mrs. Weierbach says. "As a mother, it puts you on a roller coaster."
But Lindsay, now 17, doesn't focus on the idea of a ticking time bomb but instead on fighting for a cure.
Late last year, she started Lindsay's Hope, a nonprofit scleroderma foundation which recently incorporated. The organization is committed to contributing 90 percent of all donations and funds to scleroderma research. In the first year, all money is earmarked for Jimenez's research.
Lindsay will launch the foundation with a fundraising dance in April and a tennis competition in late June.
"Lindsay's Hope" was a given for a foundation name, she says.
"We live in hope for a cure."
***
Scleroderma is a mystery.
Causes baffle researchers, although both genetic and environmental factors may play a role, according to the National Scleroderma Foundation.
Scleroderma in various forms affects some 300,000 people nationwide, with more women diagnosed than men.
Although medication can slow down disease progression and help with symptoms, at this point, there is no way to eliminate the illness.
After a series of medical tests and initial treatment with a chemotherapy drug, Lindsay was referred to Jimenez, who is director of the Thomas Jefferson Scleroderma Center and professor and chief of the connective tissues division.
"Scleroderma is rare in children and young individuals," says Jimenez, who follows some 1,200 people with the disease and sees about 100 new patients a year. "The peak age is 45.
"(Lindsay) is a bright young lady, and she is aware it can progress and be fatal, but we fortunately have been very successful in treating patients with this condition. Many people with Raynaud's remain healthy, with no effects on internal organs."
Lindsay is monitored by Jimenez and is careful about exposure to hot and cold temperatures. She takes aspirin and a beta blocker, which helps keep her blood vessels open.
The Lancaster Country Day School sophomore is realistic, almost cavalier, about the disease.
"My love for sports kind of got shot down, and it limits my playing in hot and cold weather, so I make sure I protect myself," says Lindsay, who remains an avid tennis player. "Occasionally, if I feel sick, I get worried. But other than that, I don't really think about it a lot."
Her openness about her disease, she says, actually helps her connect with people and build awareness.
Both Jimenez and Lucinda E. Dautrich, assistant director of regional giving for The Jefferson Foundation, commend Lindsay for trying to raise much-needed funds for research.
"This has tremendous potential," Dautrich says. "She is helping not only herself but countless others."
***
Jimenez's response to one of Lindsay's questions was the springboard for Lindsay's Hope.
"I asked how research progress and program funding is coming for a cure," she says. "He told me how federal funding for research has been drastically reduced.
"When I left his office, I knew I wanted to do something."
Her parents gave her their full support and enlisted the help of other guiding board members, including Ceil Treiss, Lancaster, who has a form of scleroderma.
"How exciting and inspiring that Lindsay decided to initiate Lindsay's Hope ... " Treiss says. "She is an amazing teenager, mature beyond her years."
Lindsay's parents believe the project is healing for the entire family.
"I think, Let's get this out, let's deal with it, talk about it and do something positive about the future," Weierbach says.
Mrs. Weierbach wholeheartedly agrees.
"This gives (Lindsay) a chance to take control of something out of her control."
FOR MORE INFORMATION
WHAT: Dinner dance to benefit Lindsay's Hope, a scleroderma foundation
WHEN: 7 to 11 p.m. Friday, April 4
WHERE: Bent Creek Country Club Club House, 620 Bent Creek Drive, Lititz
DETAILS: Students ages 14 to 18 who raise the most amount of money in advance for Lindsay's Hope will be crowned dance king and queen.
COST: $50 donation, 100 percent of which will benefit research and treatment of scleroderma
CONTACT: Call 875-0795, or e-mail
lindsay@lindsayshope.org. The Web site,
www.lindsayshope.org, is available but under construction.
DONATIONS: Send donations to Lindsay's Hope, c/o Weierbach, 160 N. Pointe Blvd., Suite 203, Lancaster, PA 17601.
CONTACT US: sjurgelski@LNPnews.com or 291-8756 
