Battling scleroderma with courage: Cecil Township women prepare for National Scleroderma Foundation walk at North Strabane

Jun 5, 2025 By Karen Mansfield 8 min read

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Caroline Graettinger, left, and Taitia Shelow, both of Cecil Township, have been diagnosed with scleroderma, a rare autoimmune disease that causes hardening and thickening of the skin and other organs, including the lungs, heart, and kidneys.

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Caroline Graettinger, left, and Taitia Shelow enjoy a coffee as Shelow shares some of the assistive devices she uses to help her navigate scleroderma, a rare autoimmune disease that has limited her ability to use her hands.

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Taitia Shelow shows the effects that scleroderma, a rare autoimmune disease, has had on her hands. The disease has caused contracture of her fingers and she is unable to uncurl them, making it difficult to do daily tasks such as texting and holding a coffee cup.

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Caroline Graettinger of Cecil Township has suffered from Raynaud's phenomenon, which leaves her fingers numb and turns them bluish. She also has battled painful skin ulcers on her fingers, which currently are healed.

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Taitia Shelow suffers from one of the trademark symptoms of scleroderma, a curling of the fingers, which makes it difficult to complete daily tasks.

Every morning, Taitia Shelow and Caroline Graettinger get ready to face another day grappling with a rare autoimmune disease called scleroderma.

Scleroderma, which affects about 300,000 people in the United States, is a chronic disease that causes the body to overproduce collagen, resulting in thickening and tightening of the skin that is painful and debilitating (and can cause disfiguring effects), and iti’s sometimes fatal.

Scleroderma impacts everyone differently. For some, it hardens and tightens the skin and outer body. For others, it also hardens tendons, muscles and internal organs, including the lungs.

“Before my diagnosis, I had never heard of (scleroderma). I did what I shouldn’t have done and I looked up autoimmune disorders on Google, and the news on scleroderma was worst-case stuff. I said, ‘Anything but scleroderma I’ll be OK with.’ Two weeks later, I got the diagnosis and thought, rats, I got stuck with this one. That’s the one I didn’t want to end up with,” said Graettinger.

Doctors diagnosed Graettinger, 64, with scleroderma 10 years ago. The Cecil Township resident was suffering from extreme fatigue, loss of appetite, and her skin turned an odd grayish color.

“My skin was so tight I couldn’t bend down to get things off the floor. I was exhausted, and I just didn’t have any appetite,” said Graettinger, who lost 60 pounds that first year.

Shelow, 58, of Cecil Township, was diagnosed in 2018. She was on vacation in an air-conditioned room when her fingers began to feel tingly and numb, and turned purplish-blue.

“It freaked me out. I got home and called my PCP, and he had another patient with scleroderma. He said, ‘You need to go to a rheumatologist.’ He got me an appointment with one within a few weeks, and it didn’t take too long to figure out I probably had scleroderma,” said Shelow.

Sclero means “hard” and derma means “skin.” It’s a very literal translation.

Doctors aren’t sure what triggers the mass production of collagen. What they do know is women are diagnosed more often than men. And there is no cure.

Those living with the disease rely on medication, treatments and accommodations to improve their quality of life.

Shelow and Graittinger have pain every day, and the two struggle with everyday tasks – for Shelow, whose fingers have curled inward so much due to the tightening of skin and tendons, tasks such as texting, buttoning shirts, and holding a coffee cup are difficult or impossible. She cannot shake hands to greet people.

“Recently, my fingers have started to curl a little more, and I can only straighten out my thumbs at this point. It makes picking up certain things much harder. I can’t pick up anything flat off the floor, paper or coins,” said Shelow.

Both have reduced lung function and Reynaud’s syndrome, a narrowing of the blood vessels in the fingers in response to cold, and Shelow suffers from digestive issues. Graittinger has dealt with painful skin ulcers on her fingers.

Devastated but not defeated by their condition, Shelow and Graettinger choose to find the positive.

“I try to keep a good attitude. It’s challenging. I remember thinking one day that I’ll never be 100% healthy again. I won’t be that person that I was before,” said Shelow, senior digital copywriter for Vitalant blood bank. “For me, the hardest part is having to ask for help, to ask people to do things for me. I went through stages of grief, but I never felt like ‘why me.’ I have seen people who had terrible things happen to them, so I never thought, ‘why me.'”

At a coffee shop on a recent Saturday, Shelow pulled out some of the assistive devices she uses to help her adapt: an electric hand warmer, disposable hand warmers, mittens, a stylus for typing and texting, a pillbox (both Shelow and Graettinger take several medications daily), CeraVe healing ointment for skin care, and a coffee mug with a handle.

Both wear layers of clothing to keep warm, including what they call their “Dr. Domsic vests,” zip-up vests they affectionately named after Dr. Robyn Domsic, a rheumatologist at the UPMC Scleroderma Center who specializes in scleroderma and encourages her patients to “keep their cores warm.”

“You just find ways to adapt,” said Shelow.

The two met in a support group, which they attend monthly. They are members of the National Scleroderma Foundation Mid-Atlantic chapter, which is holding the Stepping Out to Cure Scleroderma Walk at North Strabane Township Park on Saturday at 10:30 a.m.

The walk aims to help support people living with scleroderma, raise awareness, and ultimately find a cure.

“The support group that we go to has become very important to me. It’s a way of connecting with people who have this, and who understand what you’re going through,” said Graettinger, who is chairperson of the upcoming walk. “You’ll see people with a wide variety of symptoms. It’s such a rare disease, but you realize you’re not alone, and that others are experiencing what you’re going through.”

Shelow said the support group has been “a life saver” for her.

“When it first really hit me that my life would never be the same, I wallowed and felt sorry for myself and thought about it constantly,” said Shelow, who struggled to come to terms with the idea that she had an incurable disease. “There are still days like that, but having my symptoms managed and being able to do most things – albeit with adaptations – certainly helps me be optimistic. The support group and seeing through the Scleroderma Foundation’s work how others are living longer with the disease and researchers are working on a cure helps immensely.”

Shelow and Graettinger undergo care at UPMC Scleroderma Center, which specializes in diagnosing and treating the complex disease. The center includes doctors who specialize in skin, lungs, heart, GI tract, and other fields.

The skin-tightening associated with scleroderma can impact the face, and cause difficulty with facial expressions. Shelow and Graettinger said the disease has made them feel self-conscious about their appearance. “I’ve spent so much money on moisturizers and skin care products. There’s a change in the way my skin is structured, and every time I look in the mirror, I feel self-conscious,” said Graettinger.

World Scleroderma Day is June 29.

Domsic said studies show scleroderma patients experience a poorer quality of life and face increased mortality rates compared to both the general population and other rheumatic diseases.

“It’s a complicated disease, it is an uncommon disease,” said Domsic. It’s a constant challenge in this field because there is no cure, and so we are managing for expected complications and using all the tools that we have right now. One of our goals is to find a cure and I think we’re making some steps. I do get inspiration from my patients. They tolerate this with a lot of grace and that’s amazing to watch.”

Shelow and Graettinger said the NSF walk, a one-mile event, is an important tool for raising awareness about scleroderma and for people battling scleroderma to get together for a common cause.

JoAnna LaPergola, executive director of the NSF Mid-Atlantic Region, said the walk provides hope for participants.

“You have to have hope,” said LaPergola. “It’s one of the most terrible diseases I’ve run across, and everybody’s journey is different, everybody’s path is different. Our walks are about hope because right now there is no cure, so the walks help support the research and education, events and support groups. We’re trying to help (scleroderma patients) live their best lives until we can find a cure. It also brings people together. Sometimes, people feel so isolated, and it brings together those who are facing similar challenges.”

Shelow and Graettinger have shown remarkable courage in facing the challenges of scleroderma, said LaPergola.

They continue to advocate for awareness, share their journeys, and find ways to live fulfilling lives, despite the physical and emotional impact of scleroderma.

“I’m only in my 50s, and I have a wonderful family, great friends, I love my job, love going to concerts and shows and traveling, and recently became a nana. I have a lot to live for, and I’m not going to just give up,” said Shelow. “You do what you have to do to manage your disease and power through.”

Editor’s note: For information on how to join the walk or to make a donation, please visit . The local support group meets via Zoom once a month. For more information, please email sfgrouppitt@gmail.com. Domsic recommends those interested in learning more about scleroderma watch Angel’s Apprentice, a documentary that chronicles the struggles of filmmaker Ken August Meyer, who suffered from scleroderma, and explores the artwork of Paul Klee, an artist who also battled the condition.

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