Battling scleroderma with courage: Cecil Township women prepare for National Scleroderma Foundation walk at North Strabane
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鈥檚 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.
鈥淏efore my diagnosis, I had never heard of (scleroderma). I did what I shouldn鈥檛 have done and I looked up autoimmune disorders on Google, and the news on scleroderma was worst-case stuff. I said, 鈥楢nything but scleroderma I鈥檒l be OK with.鈥 Two weeks later, I got the diagnosis and thought, rats, I got stuck with this one. That鈥檚 the one I didn鈥檛 want to end up with,鈥 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.
鈥淢y skin was so tight I couldn鈥檛 bend down to get things off the floor. I was exhausted, and I just didn鈥檛 have any appetite,鈥 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.
鈥淚t freaked me out. I got home and called my PCP, and he had another patient with scleroderma. He said, 鈥榊ou need to go to a rheumatologist.鈥 He got me an appointment with one within a few weeks, and it didn鈥檛 take too long to figure out I probably had scleroderma,鈥 said Shelow.
Sclero means 鈥渉ard鈥 and derma means 鈥渟kin.鈥 It鈥檚 a very literal translation.
Doctors aren鈥檛 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 鈥 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.
鈥淩ecently, 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鈥檛 pick up anything flat off the floor, paper or coins,鈥 said Shelow.
Both have reduced lung function and Reynaud鈥檚 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.
鈥淚 try to keep a good attitude. It鈥檚 challenging. I remember thinking one day that I鈥檒l never be 100% healthy again. I won鈥檛 be that person that I was before,鈥 said Shelow, senior digital copywriter for Vitalant blood bank. 鈥淔or 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 鈥榳hy me.鈥 I have seen people who had terrible things happen to them, so I never thought, 鈥榳hy me.'鈥
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 鈥淒r. Domsic vests,鈥 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 鈥渒eep their cores warm.鈥
鈥淵ou just find ways to adapt,鈥 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.
鈥淭he support group that we go to has become very important to me. It鈥檚 a way of connecting with people who have this, and who understand what you鈥檙e going through,鈥 said Graettinger, who is chairperson of the upcoming walk. 鈥淵ou鈥檒l see people with a wide variety of symptoms. It鈥檚 such a rare disease, but you realize you鈥檙e not alone, and that others are experiencing what you鈥檙e going through.鈥
Shelow said the support group has been 鈥渁 life saver鈥 for her.
鈥淲hen 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,鈥 said Shelow, who struggled to come to terms with the idea that she had an incurable disease. 鈥淭here are still days like that, but having my symptoms managed and being able to do most things 鈥 albeit with adaptations 鈥 certainly helps me be optimistic. The support group and seeing through the Scleroderma Foundation鈥檚 work how others are living longer with the disease and researchers are working on a cure helps immensely.鈥
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. 鈥淚鈥檝e spent so much money on moisturizers and skin care products. There鈥檚 a change in the way my skin is structured, and every time I look in the mirror, I feel self-conscious,鈥 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.
鈥淚t鈥檚 a complicated disease, it is an uncommon disease,鈥 said Domsic. It鈥檚 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鈥檙e making some steps. I do get inspiration from my patients. They tolerate this with a lot of grace and that鈥檚 amazing to watch.鈥
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.
鈥淵ou have to have hope,鈥 said LaPergola. 鈥淚t鈥檚 one of the most terrible diseases I鈥檝e run across, and everybody鈥檚 journey is different, everybody鈥檚 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鈥檙e 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.鈥
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.
鈥淚鈥檓 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鈥檓 not going to just give up,鈥 said Shelow. 鈥淵ou do what you have to do to manage your disease and power through.鈥
Editor鈥檚 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鈥檚 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.