WESTBROOK – Since being diagnosed with scleroderma six years ago, Sandy Levitz Lunner of Cape Elizabeth has had to quit working and deal with some of the ugly side effects of this autoimmune disease.

Now, she’s working with Lori Harmon Chason of Windham to raise awareness of the disease and provide support for scleroderma patients in southern Maine.

To that end, the fifth annual Stepping Out to Cure Scleroderma walk is being held at noon on Saturday, May 17, at Riverbank Park in Westbrook.

Levitz Lunner said that scleroderma, also known as systemic sclerosis, is a chronic and often progressive autoimmune disease, which manifests in a painful skin condition. The disease also attacks the body’s internal organs, particularly the lungs, heart, kidneys, esophagus and gastrointestinal tract.

She said that scleroderma occurs three to four times more often in women than men, but it can also affect people of all ages, including children.

“The symptoms of scleroderma vary from mild to severe. For some, it’s a life-threatening disease, and for most of us, it has a serious impact on daily life. There are medications that can sometimes help manage symptoms and slow down the progression, but the cause is unknown and there is no cure,” Levitz Lunner said.

She first started showing the outward signs of scleroderma in 2008 when her fingers became puffy like sausages, but the skin was also hard to the touch.

Levitz Lunner said she had trouble bending her fingers and was unable to make a fist. At the same time, her hands would get unusually cold and her fingers would turn white and then blue. She also “ached from head to toe” and became anemic.

It took more than a year to get a diagnosis, but Levitz Lunner said she was lucky because it can often take three to five years before scleroderma is positively identified.

In addition to the issue with her fingers, Levitz Lunner has a number of gastrointestinal problems, as well as having diminished lung capacity and chronic fatigue.

She said the overall goal of the Stepping Out to Cure Scleroderma walk is to raise awareness of the disease and the many forms it takes, as well as to raise money for the Scleroderma Foundation New England.

Along with helping to organize the upcoming walk, Levitz Lunner and Harmon Chason also attended Advocacy Day at the Capitol in Washington, D.C., on May 6. The two women met with key staff members from the offices of Maine’s congressional delegation including Sen. Susan Collins and Rep. Chellie Pingree.

Levitz Lunner has made it her mission to spread the word about scleroderma and the adverse impacts it has on people’s lives.

She said that more people in the U.S. are estimated to have scleroderma than multiple sclerosis, but scleroderma is still a relatively unknown disease, both for doctors and those who are affected.

For example, Levitz Lunner said there is another woman in her support group whose breathing issues were misdiagnosed as asthma.

“By the time she ended up in the emergency room two years ago and was finally diagnosed with scleroderma, she was (suffering from) stage 3 pulmonary arterial hypertension (and) her heart is failing,” Levitz Lunner said.

“One of our problems in Maine is lack of awareness, even among physicians who may not be up to date on the latest diagnostic clues or more sensitive blood tests,” she added.

And while there are scleroderma clinics and treatment centers in the U.S., the closest one to people from Maine is at the Boson University Medical Center.

Earlier this month Lori Harmon Chason, of Windham, left, and Sandy Levitz Lunner, of Cape Elizabeth, attended Advocacy Day at the Capitol in Washington, D.C. The two spoke out about the need for awareness and support of people living with scleroderma. 

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