by John Gessner
Thisweek Newspapers

It started for Marty Appleby five years ago with sharp tingling in her fingers.

ìIt was like electric shocks were coming out of my fingertips,î said the 62-year-old Burnsville resident. ìAt the time I called them my laser hands. They looked like sausages, my fingers. The hardness started going up my arms.î

Appleby was diagnosed with scleroderma, a chronic, often progressive autoimmune disease. Like arthritis, lupus and multiple sclerosis, it causes the the bodyís immune system to attack its own tissues.

Scleroderma, which literally means ìhard skin,î can cause thickening and tightening of the skin, and in some cases serious damage to internal organs.

The disease that can range from a controllable nuisance to a life-threatening foe. Through the west metro support group of the Scleroderma Foundation Minnesota Chapter, Appleby has met people at every stage of the disease.

Thatís why she and many fellow sufferers ó three out of four of whom are women ó will participate in Sundayís (June 6) walk to benefit the chapter. The two-mile ìStepping Out to Cure Sclerodermaî walk will begin at 8:30 am. at Staring Lake in Eden Prairie.

Appleby jokes that the tightening of her skin has softened her wrinkles, but scleroderma has also diminished her quality of life.

Like many sufferers she gets Raynaudís phenomenon ó attacks of blood-vessel restriction in response to cold ó and often has trouble eating and digesting because of esophageal dysfunction the disease can bring.

However debilitating, her case might be considered mild compared with that of Diane Penwarden, who will also participate in the walk.

The 51-year-old Eagan resident has had part of her stomach removed and two fingers amputated because of the excessive production of collagen that triggers the symptoms.

Systemic scleroderma, as opposed to localized scleroderma affecting only areas of skin, also attacks internal organs such as the esophagus, heart, lungs and kidneys.

For Penwarden, it started with sore and swollen fingertips in 1995. By early 1996, ìI was getting weaker and weaker,î she said. ìMy hands were getting worse. My fingers started contracting and bending. My fingers were completely touching the palms of my hands.î

Bleeding in her stomach had Penwarden vomiting blood. She went from 120 pounds to 82. Her condition forced her to quit her job at Northwest Airlines.

ìIn October of í97 I realized I was done working and resigned,î Penwarden said. ìIt was a tough day. My husband went with me.î

She had three surgeries to rebuild the joints in her hands. ì(The doctor) mentioned amputation as a last resort,î Penwarden recalled. ìI eventually said, ëTake them.í î

Another walk participant, Lisa Roesner of Lakeville, got the tingling and numbness in her hands and arms more than a year ago. She was diagnosed last June.

Methotrexate, a chemotherapy drug commonly prescribed to scleroderma patients, resoftened the skin that had hardened on her hands, arms and thighs.

ìThey all have real side effects,î Roesner said of her medications. ìAnd every month you have to have your blood tested, because they can be toxic. Iím grateful that Iím not having any horrible side effects.î

Fatigue, a common symptom of scleroderma, is her biggest enemy, especially with four daughters to raise, said Roesner, 39. Sheís meticulous about health and exercise but said the disease now appears to have affected her lungs.

ìIt will just continue to get worse,î Roesner said. ìItís going to keep going with me. Itís not going to go away.î

For more information about the walk of the Scleroderma Foundation, visit www.scleroderma.org/chapter/minnesota..

John Gessner is at burnsville.thisweek@ecm-inc.com.

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