Young woman battling Scleroderma grateful for specialized help at Temple Health

PHILADELPHIA (WPVI) -- When a rare disease strikes, getting a diagnosis can take years, enabling the disease to progress.

A young woman from the Mayfair section of Philadelphia details her battle to get answers, and help others in her situation.

Felicia Forsythe was turning 21, trying to lose a few pounds. But she didn't expect what happened.

"In two months, I had lost 86 pounds," recounts Forsythe.

Although Forsythe's doctor said her blood work was normal, the problems mounted.

"I'll just be sitting there super cold and everybody else was warm," she says. "My skin started getting like real tight. And then I started getting these little patches like on my hand here. I was constantly coughing."

After her doctor implied drug use was the cause, Forsythe walked out, and began searching for help online.

She found the term "scleroderma" - and Temple Health.

"It is considered an autoimmune condition where there is excessive collagen deposition in the blood vessels, and in many other major organs," says Dr. Jonathan Galli, a pulmonary specialist at Temple Health.

Dr. Galli says scleroderma can affect the digestive tract, lungs, heart, kidneys, and especially the skin.

Cold fingers and toes are an early sign, and skin begins to tighten and harden.

Blood tests for autoimmune antibodies also help with a diagnosis.

"Sometimes it takes a whole team of specialists to piece this together," Dr. Galli notes.

And it takes that team to manage the symptoms and complications.

Forsythe needs a host of daily medications, even two years after a lung transplant.

Dr. Galli says research and treatment are improving and lengthening lives.

"We've had some new medications both to treat inflammation in the lung tissue as well as scarring in the lung tissue," he says.

Today, Forsythe fights for her own health - and to spread the word on scleroderma.

"It is the path that I was given. Now I just need to learn how to live with it," she say firmly.

Forsythe says a hospital with a scleroderma center like Temple has been invaluable in treating complications aggressively.