Living With a Rare Autoimmune Condition: Ricky’s Journey
Co-authored by Ricky Jordan
April 21st, 2026
Living with a rare autoimmune disease often means navigating long stretches of uncertainty before answers surface. For Ricky Jordan, that uncertainty began more than a decade ago and ultimately led him through a life-changing diagnosis, major treatments, and a heart transplant. Today, he shares his experience to help others feel informed, empowered, and less alone.
Ricky’s journey started in 2013, when shortness of breath, fatigue, and unexplained changes in his health sent him searching for answers. He saw multiple physicians, five in total before reaching a rheumatologist who finally identified the culprit: systemic sclerosis, or scleroderma. A rare autoimmune disease that affects the skin and connective tissues, but can also impact major organs. For Ricky, the lungs were among the first to be affected. Even though the path to diagnosis took nearly a year, he now recognises that this timeframe was unusually fast compared to many others living with the condition.
Receiving a diagnosis was only the beginning of what would become a complex medical path. Over the next several years, Ricky experienced both stability and decline as his condition evolved. The most significant intervention came in 2018, when he underwent a stem cell transplant designed to reboot his immune system. The treatment halted the aggressive progression affecting his lungs and, in many ways, saved his life.
But some damage could not be undone. The effects of his disease eventually led him to require a heart transplant, a daunting milestone that marked a profound turning point. Now, three years post-transplant, Ricky focuses on staying well, being present for his young son, and embracing the day-to-day life he fought so hard to keep.
Finding Purpose Through Advocacy and Connection
Ricky’s experience deepened his commitment to patient advocacy. His involvement with a patient-led organisation that elevates real patient voices introduced him to broader conversations happening across healthcare. Those conversations and his willingness to speak openly, brought him to the HLTH conference in Las Vegas.
There, while walking through the exhibitor floor, Ricky stopped at the electronRx stand. Images of people completing pulmonary function tests immediately struck him. He had done those tests countless times, each one carrying its own stress, uncertainty, and fear of what the results might reveal.
The idea of being able to monitor lung function through a mobile phone wasn’t just intriguing for Ricky; it felt transformative. Months often separate clinical tests, and technicians administering them cannot explain the results in real time. For patients already managing anxiety around their condition, waiting for feedback can feel overwhelming. Remote, patient-controlled monitoring represents reassurance, agency, and the ability to respond sooner when something changes.
Why Empowering Patients Matters
Reflecting on the early years of his illness, Ricky admits he once believed that having good doctors was enough. Over time, he realised the power of connecting with other patients, people who understood his reality because they lived it too. Those conversations provided insight, support, and practical knowledge he couldn’t have found anywhere else. Today, he encourages newly diagnosed individuals to seek out community early. Patient networks offer emotional grounding and real-world wisdom, especially when navigating rare or complex conditions.
Ricky now sees this phase of his life as an opportunity to help others. He openly shares his experiences, diagnosis, stem cell transplant, heart transplant, and everything in between, so that someone else might recognise symptoms sooner, feel less isolated, or understand their options more clearly.
His goal is simple: to reach the next person who feels “something isn’t right,” and offer the support, clarity, and hope he once needed.
