My Evolution: Pediatric Scleroderma

By the year 2015 I had spent seven and a half of my eight years on earth living with my family in Shanghai, China. We were living as expatriates in China for my fathers job in the automotive industry. Life seemed normal, as I was busy with school sports days, class work, swimming lessons, playing with friends, and family trips for Christmas and Chinese New Year. But suddenly, we rushed to see an onslaught of doctors and urgently repatriated to the US. My mother noticed that I was having unusual, mysterious medical symptoms. Initially, I was unable to hold a pencil or tie my shoes, my face was rounder and harder. Eventually, I could no longer climb up into a car or bed, I crawled up the stairs, and my overall fine and gross motor skills were diminishing. My skin was hard from head to toe, so hard that when you pushed on my cheeks, they didn’t move at all. I felt like I was becoming a statue! The International clinic medical team were puzzled with the presentation of my symptoms, and struggled to make a logical diagnosis. Even the phlebotomist failed every attempt to draw my blood; my veins were too compressed. In an instant, my life changed from being an innocent second grader who loved Disney, dancing, elephants and friends into a child overwhelmed with modern medicine, needle pokes, hospital stays, diagnostic testing, and the crushing fear of death.

Following a whirlwind return to the US, I began a battery of tests: X-ray’s, MRI’s, CT scans, Pulmonary Function Tests, skin biopsy, swallow studies, EEG, EKG, kidney doppler, and more. In an instant, I was diagnosed with a rare autoimmune disorder called systemic scleroderma with Interstitial Lung Disease. Approximately only 1 out of 1 million children are diagnosed with my specific manifestation of the disease each year, and there is no cure. The first rheumatologist that examined me approximated my life expectancy to be 5-10 years. I Overwhelmed and immediately flush. ‘Did that doctor just say I was going to die by the time I’m eighteen?’

My intense roller coaster life began Mothers Day weekend 2015 with chemotherapy, IVIG, and IV Steroids at Cleveland Clinic. Therapeutic protocol began with days of IV infusions, 9 days a month, lasting 10-12 hours each day, for the first 6 months. Infusion treatments continued for a full year with variations in timing and drugs. I remember on one long inpatient infusion day, I turned to my mom and asked, “Am I going to die?” . My mom was heartbroken; she couldn’t bear to share the prognosis with me.

Throughout that first year of treatments, my mother lovingly reinforced her belief in my inner strength, and encouraged me to find optimism in each day. She was quick to celebrate my successes and distract me from the uncomfortable, often painful, treatments. Mom is a very compassionate person, and she wanted me to focus on the remarkable parts of my life. When a “pity party” started to fester in my head, Mom helped to guide me into a place of gratitude. I had so much to be thankful for: I could walk, I wasn’t missing fingers, I was still able to attend school, and I was not on oxygen like other patients. As my body slowly responded tomedication, I embraced the realization that I was blessed with top notch medical care which produced encouraging results. It was an adult revelation for an 8 year old child. Few pediatric patients responded to treatment as well as I did, and some remained with compromised movement, with their hands, arms and face becoming mis-shapen. Due to scleroderma’s incredible rarity, I had never seen another patient like me, even in the hospital. However, it wasn’t long before other juvenile scleroderma patients and I found each other.

The first scleroderma patient I encountered was diagnosed with linear morphea. My grandma saw her on Facebook selling artistically painted rocks that she had created to help cover her medical costs to treat aggressive morphea. We reached out to her family and discovered that we were both patients in the Pediatric Rheumatology clinic at University of Michigan. We met in the gift shop. A girl with long blond hair was so shy and quiet, I didn’t know what to say to her so we talked about some toys in the gift shop and the fact that they didn’t have Littlest Pet Shop toys. We saw a hospital service dog in the lobby and instantly rushed over for a puppy hug! It was good to feel normal, even at the hospital.

Soon after that a parent of a systemic scleroderma patient saw an interview that Mom and I participated in on the Detroit 6 o’clock news. The family searched out my mom through a local Scleroderma Foundation and connected with a phone call. The two sclero-moms shared stories, support and bonded on the phone for hours! A few weeks later we met up at the Detroit Zoo and raised money for scleroderma together at the Stampede for Scleroderma. It was my first scleroderma fundraiser. We were the only 2 pediatric scleroderma patients there, but it was so relaxing to be with someone who was sick like me, but bubbly, happy and silly!

Learning about the vastly different journey’s of these two pediatric scleroderma patients amplified the fact that I was immensely fortunate with the success of my IV treatment plan. Both of these girls had difficulties with insurance coverage, excessively high bills, which was limiting their access to care, therefore their treatments were nowhere near as effective as mine was proving to be. I felt compelled to help my new friends, and other scleroderma kids like them.

Having scleroderma presented me with the opportunity to make an impact on patient lives in a unique way. Meeting the pediatric patients, and then meeting representatives from the Scleroderma Foundation Michigan was about to open up a new scleroderma world for me. This was perhaps the most defining moment where scleroderma significantly impacted the change in my life. Overnight, I surprisingly became a Patient Educator at age 9 when my mother was invited to speak at Central Michigan University in 2016.

Mom was well spoken, direct, a bit emotional, but with a touch of humor as she delivered the story of my scleroderma diagnosis to 150 second year medical students. She was the last of 3 speakers. As she spoke, I realized mom was detailing my experience as seen from the outside from her perspective. I popped out of my seat and snuck up to my mom, gently removing the microphone from her hand. She smiled nervously, because she had no idea what I was doing. “Hi! I’m Grace. I’m the one with scleroderma. If you want to be a good doctor, get to know your patients, be nice, and help them not be so scared…” I spent the next 10 minutes sharing myperspective on being a pediatric scleroderma patient. The med students laughed as I shared my preference for the chocolate cake at U of M, and tips on how to get more frequent visits from therapy dogs. Soon I was invited to share my story at Wayne State University and Michigan State University. I continue to return to the universities each year unfolding both fun and frightening anecdotes of my scleroderma experience with future doctors. It was apparent to me that by sharing my story with the medical community, more doctors would be able to identify and diagnose scleroderma, ultimately improving the lives of more patients. It became undeniably evident that this was a direction I was meant to pursue. In an instant I was embracing every opportunity to engage in awareness and education events focused on scleroderma.

I have grown and learned effective ways to advocate for scleroderma patients, created awareness, became involved with scleroderma fundraisers, received proclamations for scleroderma month, educated medical professionals, and given my all to kids with this awful rheumatic disease. Self-discovery has revealed to me the gift that I have to offer others with scleroderma is that of hope, love and education. In the early days of diagnosis I felt sorry for myself when I was sick. But, I found a bright side that filled me with happiness to influence change; helping other scleroderma patients by becoming a part of the solution, rather than lingering on the problem. Thrust into an unpleasant, unfair situation forced me to become an adult and stare death in the face. But more importantly, it opened my eyes to see the talent and compassion that I have to share with scleroderma patients, and future physicians.

While keeping in mind that systemic scleroderma is incurable, in 2023 my scleroderma specialist reported that my scleroderma is largely undetectable. My skin score tests, PFT’s, CT scans and all blood work, are essentially normal! I still experience flairs from time to time, and have random scleroderma related challenges, but I am definitely blessed with disease reversal. My course of action now is to remain on immune suppressing medications, follow up with the specialist, regular diagnostic testing, and true vigilance in overall medical care.

I’m a senior in high school, and I recognize that significant change is coming, but I’m not scared. I will use my advocacy and awareness experience to my advantage. I am a resilient, bold, compassionate person because of scleroderma. It may not have been the path that my parents and I imagined for my life, but I have learned that I can create a significant impact on future doctors, their ability to diagnose scleroderma, and foster positive mental health for scleroderma patients. Scleroderma is a rare disease, and I know that being rare can be a special way to make a greater difference in this world. My ambition combined with these scleroderma experiences will continue to fill me with maturity, focus, drive and a desire to overcome any hurdles ahead for myself, and for those living with scleroderma.