Living a Good Life with Scleroderma

Amy Gietzen was 19 when her world changed forever. She was diagnosed with systemic scleroderma, a chronic connective tissue disease marked by tightening of the skin and joint pain.  Symptoms can range from very mild to life threatening. For Amy, who endures pain on a daily basis, they were life-changing.

“I had a plan on how my life was going to be,” said Gietzen. “You have to leave your old life behind and start a new one. The new you has limitations.”

The “old Amy” worked as a medical secretary and attended school, with plans to become a nurse. But chronic pain, fatigue and painful sores on her hands made it impossible to continue on the path she envisioned.

“School was the first thing to go,” Gietzen recalled. After more than a dozen surgeries, she came to the difficult realization she could not continue working. Encouraged by her parents, she obtained the Social Security Disability Insurance (SSDI) benefits she paid for through FICA taxes.

“It was difficult because I wanted to work, and I thought there were people out there who were sicker than me.

“When you are young, it’s hard to ask for help and admit you can’t do certain things. You’ve lost a lot already, friends, social activities―and then to lose your job…

Gietzen said it took a long time, but she is at a good place now. Her experience being diagnosed as a teenager and not being able to find information or resources for young scleroderma patients motivated her to develop resources for young people.

She runs the Scleroderma Super Starz online support group and focuses on patients ages 13 to 50.

“We have young adults, teenagers, and even parents join,” said Gietzen. She also manages the Staying Alive with Scleroderma Facebook page and blogs on Professional Pin-Cushion in Makeup & Mittens.

Ironically, she considers herself lucky to be diagnosed at such a young age, as many people endure symptoms for years before being diagnosed―delaying treatment and resulting in worsening symptoms. And although she was diagnosed at 19, she knows that scleroderma is changing lives for children at even younger ages. She is determined to do as much as she can to let them know they are not alone, and that a changed life can still be a super star life.

Editor’s note: Allsup helps individuals apply for SSDI and return to work.

This profile is part of the series, #IAmInvisibleNoMore, to feature the top vote-getting videos that were part of the video contest earlier this year. The Invisible Disabilities Association and Allsup encouraged individuals to share their invisible disabilities stories. Click here for details.

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