A Story Can Be a Powerful Tool

By: Pamela Pour

When Something Was Clearly Wrong

While my mind was racing and my thoughts were darting in every direction. I lived in a clouded haze, watching the world move past me in slow motion. My eight-year-old daughter had bizarre symptoms that doctors either wrote off as no big deal or were just perplexed and did not offer any additional place for me to turn. In a matter of just a few months, my daughter was no longer able to tie her shoes, color inside the lines, climb into a bed or car unassisted, or fit a toothbrush between her lips and teeth. 

My instincts told me that something was incredibly wrong, and I needed to seek more aggressive medical attention for my daughter. But it was not that simple.

In 2015, we were living in Shanghai, China, for my husband's job. After recognizing that our daughter, Grace, was progressively getting worse, we knew that it was essential to travel back to the United States for medical evaluation. Like nearly every parent of a child with scleroderma, we were suddenly thrust onto a roller coaster of appointments, diagnostic tests, medical conversations, and more questions than answers.

Searching for Answers

Unfortunately, my husband and son had to remain in China while Grace and I continued seeking answers in the US at Detroit Children's Hospital, and later at the Cleveland Clinic. Living out of two suitcases in hotels and eventually corporate housing became increasingly isolating. Each day felt like treading water as I searched desperately for a diagnosis and treatment plan. The uncertainty surrounding Grace's condition, coupled with a rheumatologist's lack of confidence, only intensified my anxiety.

Night after night, I would find myself on the floor beside my bed, unable to catch my breath as panic overtook my mind and body.

A Life-Changing Diagnosis

Eleven years ago, Grace was diagnosed with systemic scleroderma and interstitial lung disease. That diagnosis changed our family's life forever.

While it would be easy to focus only on what was lost, our journey has also been filled with hope, resilience, and purpose. Those difficult early months navigating the world of scleroderma ultimately shaped the work Grace and I do today.

I became a scleroderma advocate, educator, and support group leader because I never want another parent to experience the helplessness, isolation, and fear that I felt. By educating our communities, future physicians, lawmakers, and anyone willing to listen, I hope to shorten the path to diagnosis and help ensure that children receive care from the nation's leading scleroderma specialists.

The Question I Am Asked Most Often

People frequently ask, ‘Why do you do advocacy and education in the scleroderma community?’ or ‘What got you started as a scleroderma advocate?’ There are simple answers to these questions, but also quite complex responses. I have never been a person who stood up to speak my mind. I always preferred to function quietly in the background, avoiding drawing attention to myself. But when life changes course in such a dramatic and heartbreaking way, a mother discovers strengths she never knew she possessed.

A Conversation I'll Never Forget

Approximately two months into the process of determining a diagnosis and treatment plan, I found myself back on the floor next to the bed, unable to move, struggling to catch my breath at one o’clock in the morning. Family and friends in the US were all at home, sound asleep, my husband was wrapped up in meetings at work in Shanghai, and I desperately needed someone. I reached out to my good friend Suz in China, ‘I’m on the floor again. Can’t breathe. She responded instantaneously, helping me find control of my breathing. After about 20 minutes of text exchanges, she ended by telling me, ‘God will find a way to not only heal Grace but also to empower you to help other people with scleroderma’. At the time, I didn't believe her. But her words stayed with me.

Finding My Voice

Ten months later, I was invited to tell Grace’s scleroderma story to a group of over 100 second-year medical students at Central Michigan University. I joined a panel alongside three other scleroderma patients to help educate future physicians about the disease.

That was the moment I realized Suz had been right. One day, one of those students might diagnose scleroderma earlier because of what they learned from us. The students were engaged, curious, and eager to learn. Grace even stood up and began answering questions herself. She completely stole the show.

Educating others about scleroderma was empowering for both of us. It became clear that the lived experience of patients and families offered lessons that could not be found in a textbook.

Why Advocacy Matters

Why am I a scleroderma advocate, educator, and support group leader?

I saw my daughter's eyes light up as we shared our experience with future doctors. We were sad that Grace has scleroderma, but we were filled with joy knowing that a simple story could help countless other patients.

Every project we undertake is driven by optimism for all people affected by scleroderma. As we receive feedback from patients, healthcare professionals, and community members, the need for advocacy becomes even more apparent.

Grace's story has become a tool for change. We have shared it in medical schools, on Capitol Hill, at conferences, fundraisers, schools, community events, and one-on-one conversations. Wherever people are willing to listen, we are willing to speak.

Sharing your scleroderma story is empowering. It is impactful. It creates meaningful change. And one day, it may help lead us to a cure.

Pamela Pour is a dedicated scleroderma advocate, educator, and support g

roup leader from Michigan. Inspired by her daughter Grace's journey with pediatric systemic scleroderma, Pamela has spent more than a decade helping families navigate the challenges of diagnosis, treatment, and life with a rare disease. She remains deeply committed to serving the pediatric scleroderma community through education, advocacy, and peer support. Most recently, Pamela helped organize our pediatric scleroderma conference, Caring for Kids with Scleroderma, bringing together families, healthcare professionals, and advocates to share knowledge, build connections, and create hope for the future.

If you're ready to turn your experience into action, we invite you to join our Advocacy Team. Your story could be the one that helps a doctor recognize scleroderma sooner, influences a policy decision, or reminds another patient that they are not alone. Be a voice for change. Be a voice for hope. Join our Advocacy Team today. Learn more here: https://www.stopscleroderma.org/advocacy