Growing Up with Scleroderma

By Grace Pour

Where It All Began

Imagine with no warning you and your mother board a plane and fly 8000 miles halfway across the world and land back in cold, windy Michigan, leaving behind everything you’ve known for more than seven years. Your parents have recently been concerned about something. They’ve taken you to quite a few medical appointments lately, but you feel fine. Shanghai, China had been my home since I was a baby, and although I had visited the United States several times, it was a place that I saw as a vacation, a brief stop to see family before returning home to Asia. This time, our first stop was not to see family or friends, but instead the pediatrician's office. Life became a sudden whirlwind. Little did I know that I would never return home to Shanghai again, because I was quickly diagnosed with systemic scleroderma and interstitial lung disease.

Growing up in Medical Offices: The Lessons I Learned

I cannot count the number of doctors I saw, needle pokes I experienced, or scans I endured. Mom filled in the details of those first two months visiting 3 medical centers. Two CT scans, two MRI’s, two X-rays, two echocardiograms, two kidney dopplers, two punch biopsies, one swallow study, one upper GI, three pulmonary function tests, and poked more than thirty times (ultimately leading to the need for a medi-port to be implanted), with over 40 tubes of blood drawn. That was just the beginning.

I learned not to like nor trust medical professionals, because the first few encounters were so insensitive, abrasive, and unsympathetic. I spent most days at appointments, testing, and eventually in infusion centers. The worst moment was when I was evaluated by the first pediatric rheumatologist. My mother and I were sitting in his office and my father was on a FaceTime call in the middle of the night in China. As my parents discussed the success of treatments and overall expected outcomes, the doctor told my parents that I had five to ten years to live, right in front of me! I did not feel sick, in fact I was still wondering why everyone seemed so concerned. I was terrified and traumatized. 

I learned so many things as a young patient, things that I hope no child will ever have to experience for themselves. I understand where a port is placed, and how it functions. I am also familiar with the side effects and risks of chemotherapy drugs. I experienced the horrible side effects of strong IV and oral steroids including: intense hunger, anger, insomnia, insulin spikes, diabetes, and Cushing Syndrome. But in the midst of these horrible lessons, I experienced some positive interactions and realizations.

The Positive Side of Pediatric Medical Care: More Lessons

I quickly learned to lean on the Child Life Department at every hospital I visited, always checking the therapy dog schedule and signing up for visits! As we switched care to the fourth medical institution, I learned that pediatric rheumatologists can be compassionate and kind, even coming to see me on their day off and playing video games with me. I learned which hospitals had the best pudding, cake, and overall dinner menu as well! And during all of this I found my voice. The discovery that children can speak up and share their thoughts as a patient was a pivotal moment for me.

Initially, I was so aggravated being asked my name and birthdate each time someone new entered the room. All I wanted was to be left alone; let my mom handle things.  Slowly, I could see that people were interested in what I had to say. The realization of the rarity of my condition had still not set in, but I could see that there was important information held within me. 

Scleroderma and Me Today

I am often asked about my medical status in relation to systemic scleroderma and ILD today. The treatment I received was incredibly aggressive, and my disease was diagnosed and treated immediately. After 2 years, my skin scores were nearly zero, and remain that way today. The interstitial lung disease is undetectable in my lung CT scan, although I am left with minor scarring in my lungs. I still have some issues with GERD/acid reflux, knee and joint pain, side effects from my treatments, as well as a secondary autoimmune condition called Hidradenitis Suppurativa (HS), which is moderately under control. However, I feel so much better, and scleroderma does not rule my life.

I am More than a Patient

While there is no cure for systemic scleroderma, and I will have it my entire life, there is so much more to who I am. I learned at a very young age that I can take a horrible thing and use it to help others. Shortly after I turned nine years old, my mother was asked to speak at Central Michigan University School of Medicine to future doctors, teaching them about scleroderma. Sitting in the audience, I felt like I had something more to say, my mom was sharing a lot of clinical information, but they needed to know so much more. I joined Mom at the podium, asked for the microphone and began telling my story in my own words. I have spoken to nearly 4,000 future doctors from different medical schools since that day. My hope is that by sharing my story I will help future scleroderma patients achieve earlier diagnosis and treatment. 

Each year opportunities have presented themselves for me to bring awareness and education about scleroderma to the world. Over the years, I have found that raising awareness about scleroderma is both empowering and rewarding. I have shared my story through local news interviews, awareness projects, and patient advocacy events. At age eleven, I received the Beacon of Hope for Scleroderma Award, and since then I have participated in leadership and educational programs with the Scleroderma Foundation of Greater Chicago and the Scleroderma Research Foundation. In April, my mother and I led the pediatric patient portion of the Caring for Kids with Scleroderma Conference in Chicago. Most recently, I traveled to Washington, D.C. to meet with lawmakers and advocate for policies that support patients and medical research. This type of work is immensely rewarding, and empowering, increasing the hope not only for others but also for myself. 

More Than My Diagnosis

While scleroderma will always be part of my life, it is only one part of who I am.

I have been horseback riding since 2017, and competing in English riding since 2021. Horses are one of my biggest passions. I also love singing, theater, and Broadway shows. Throughout middle school and high school, I participated in drama productions, and today I am a member of the Madonna University Chorale. I also love traveling with my family. Japan is my favorite destination so far, although New York City is a close second. I would happily see a Broadway show every day if I could!

Today, I am studying Forensic Science at Madonna University. I am especially interested in forensic DNA and hope to pursue internships with both the FBI and a medical research laboratory as I explore future career paths.

Of course, there are still days when I deal with fatigue, aches, and other challenges. But scleroderma has never stopped me from pursuing the things I love or working toward my goals. In fact, meeting other pediatric scleroderma patients motivates me to keep advocating, educating, and raising awareness. If there is one thing I hope families take away from my story, it is this: a diagnosis of scleroderma does not mean a child cannot live a full, happy, and meaningful life. I am proof of that.

Bio: About the Author

Grace Pour was diagnosed with systemic scleroderma and interstitial lung disease at 8 years old. Today, she is a college student studying Forensic Science at Madonna University, an advocate for the scleroderma community, and a frequent speaker at medical schools and patient education events. Through her advocacy, Grace has helped educate thousands of future healthcare professionals about the realities of living with a rare disease. When she's not raising awareness, she enjoys horseback riding, singing, theater, and traveling with her family.

Connect with Grace:

Instagram: @Scleroderma_girl

Website: Sclerodermagirl.com