Diagnosed with Scleroderma at age 15

 

Tierra Springer

Simple tasks that became impossible because of rheumatic disease:

  • Typing and writing
  • Grocery shopping (the cool temps affect mobility in hands)
  • Enjoying a night out with friends

Overview

It was just two weeks before her 16th birthday when Tierra Springer was diagnosed with systemic scleroderma – a disease of which she knew nothing. Tierra researched her diagnosis online and was lucky enough to be connected with a rheumatologist immediately, giving her the opportunity to ask questions directly and learn more. Now 20-years-old Tierra has a much deeper understanding of her diagnosis, thanks in large part to the strong relationship she’s built with her rheumatologist, whom she calls a true partner. Tierra shares her story to help other patients find their voice and give support with this difficult diagnosis.

Tierra’s Story: Finding a Partner in Her Rheumatologist

Tierra was thinking about getting her driver’s license and celebrating her 16th birthday with friends, when her hands started turning blue and she began suffering from extreme heart burn and acid reflux. For six months, Tierra thought she had an allergy but couldn’t determine the source. When she could no longer close her hands, she rushed to an urgent care facility and after one misdiagnosis and a referral, she was diagnosed with systemic scleroderma two weeks before her 16th birthday. With no idea what the diagnosis meant, Tierra turned to her medical team to provide her answers. After four years together, Tierra still looks to her rheumatologist as a partner. Dr. Aryeh Fischer listens to her concerns and asks questions about her feelings, really considering her specific case instead of just pulling out a notepad and writing prescriptions. He’s given her a much deeper understanding of her diagnosis and left her feeling empowered to take on the disease, while inspiring her to give voice to those who may not share her gumption.

What It Means to Be 20 Years Old with a Rheumatic Disease

Tierra considers herself a normal 20 year old. She enjoys dancing, cooking, hanging out with friends and spending time with her husband of almost three years. She is a full-time student and works part-time as a waitress. And she does it all with a rare disease affecting her skin and vital internal organs.

Tierra’s diagnosis affects her daily life in the even the smallest of ways; think about much we use our hands on a daily basis and now, Tierra is nervous using hers because of their appearance and mobility. She’s learned a lot about biology and medications, coping with her diagnosis through education and declaring a major in public health to build a career helping others do the same. Some days are good and some days Tierra struggles to get out of bed. It’s harder to enjoy a night out with friends, dancing can be painful and she tires easily. Her hands turn blue and stiffen in the grocery store due to the cooler temperatures; Tierra likens the pain of opening her hand to feeling “like it’s tearing my skin apart.”

Tierra’s Window of Opportunity: Giving a Voice to Systemic Scleroderma

Tierra is determined to continue living a full life – not giving in to systemic scleroderma. She speaks publicly about her diagnosis, promotes exercise and healthy eating, advises joining a support group and stresses the importance of finding a rheumatologist that feels like family. She advocates for patients to learn and respect their personal limits, as people respond differently to similar diagnoses. Tierra knows not everyone with rheumatic diseases are able to share their stories, so she wants to use her voice to make a difference in the health community, raising awareness of and bringing support to those who live with the diagnoses.

Tierra is a 20-year-old living with systemic scleroderma, with a positive outlook on her diagnosis and the future of rheumatology. Through education and awareness, Tierra hopes her story will help others understand the disease and provide support to patients going through similar challenges.