As a mother of two young children and living with scleroderma for over a decade, I have firsthand experience of the impacts of adversity that can come with not only having Scleroderma but also being female and a person of color. Through the many ups and downs over the years, I have learned the importance of resilience, wellness, faith and perseverance that have helped shape myself, my family and my community for the better. Scleroderma has been one of my greatest teachers, and one of my greatest hurdles, which continuously shapes my outlook on how marginalized people are held in healthcare spaces. Especially when it comes to looking at the whole human being including the body, mind and spiritual connection.

I was diagnosed with scleroderma at the age of 15. My symptoms began as swelling in my hands that prevented me from making a fist, acid reflux, body aches, joint pain, and raynauds. Shortly after I was found to have interstitial lung disease and esophageal hardening. At first I was just going through the motions of life, not fully aware of what the diagnosis meant for me in the long run. Changes in my life like doctor appointments, scans, tests, medications, and so on just became my “new norm”. I took it as it came and continued living. Though still rare, 15 years ago, scleroderma was even less heard of. The doctor that diagnosed me, a pediatric rheumatologist at Children’s Hospital, did not see me after the diagnosis. He was not comfortable treating me because of how little he knew about the disease -I remain immensely grateful for his honesty. I transferred to a different hospital where I was blessed with an amazing rheumatologist. He did not work in pediatrics and I was his youngest patient. By my side he guided me as I embarked on the marathon I continue to run to this day.

The early years of my disease I juggled my new life with relative ease given the circumstances. I graduated highschool despite missing months of school at a time for daily hyperbaric treatments and two surgeries. I maintained a GPA that allowed me to continue participating in varsity cheer.

I continued to laugh and enjoy life between the pain, ER visits and the pharmacy of pills including immunosuppressants and steroids I was taking daily. I took the tough days in stride, and it wasn’t until I became a mother to two beautiful boys that everything really changed. I realized that I could no longer have “bad days” just for me. As my body, mind and spirit were stretched to hold two other beings, I began to feel how the moments of pain, stress and exhaustion I was experiencing impacted my children, my family and my community. I realized that I wanted something to change and that I had not only physical but also emotional trauma from scleroderma to heal from. I believed that the way I felt and lived could change. I wanted true health and wellness, that revolved around so much more than pain management.

I began to explore all areas of health and wellness, and realize rather quickly that BIPOC women were missing from many of these spaces. Whether it was in birth, in nutrition, in exercise, in spiritual connection or in diagnosis management, the deep sense of community and belonging wasn’t there. That is why I have decided to help create the community I hope to see, and a community worth living in for everyone. I began volunteering my time in hospital spaces,

and taking courses to support new mothers and others like me, who may not know how to access whole being resources. My dream is to become a source of information for all people, that can help bridge the gap between health and wellness. I want to show all people how living with scleroderma has guided me to take control of my health and wellness. I have shifted my thinking and my lifestyle to include exercise, proper nutrition and listening to my body when it is needing something. I have prioritized self-care and spiritual growth. Through all of these experiences, I realized that having this knowledge created a ripple effect among the people that are in my life. From my children, to my family and friends, to my community. Wellness, growth, resilience and perseverance started to permeate the world I was creating.

I believe that living through all the adversities I have had, makes me more compassionate and understanding to all different walks of life. I know how it feels to live through pain. To not want to get up, or keep going. I also know how it feels to find a support network and to find strength to keep going. As such, I feel grateful to be living with scleroderma. It has changed my perspective on what having true health and wellness really means. It has shifted my perspective on the importance of the “little things” that we can do each day. It has guided me to want to create safe spaces of health and wellness, even for people who may not feel like they belong in those spaces. It has drawn me closer to myself and to all those I encounter with an open heart and a listening ear. 

With the help of this scholarship, I believe that I can help create space for marginalized populations. I can help shape our healthcare spaces to include someone who truly believes in the power of whole being wellness. I can be someone who advocates for the BIPOC community and for people living with chronic disease. I can be a guiding light, a teacher and resource for growth- as much as scleroderma has been for me. I appreciate your time and the opportunity to share a vision of a more inclusive, safe and healthier future for all. If you need any further information from me please feel free to contact me via phone or email. I would like to end this essay by honoring family and friends that have extended their love and support through this journey and by giving a special acknowledgment to a dear friend, support group leader, and shining light that lost her battle to scleroderma this month. Thank you!

–Tierra