Gerald Wysoczynski Jr.
Gene: TERT

Hi, my name is Gerald Wysoczynski Jr. I live in Dallas, Texas, and I was diagnosed with Dyskeratosis Congenita (DC), a Telomere Biology Disorder (TBD), at age 31. But my story began long before that. As a child, I experienced esophageal strictures, abnormal skin pigmentation, short stature, and recurring health issues that never fully connected. In my early twenties, my platelets were noted to be low, around 55,000, but simply monitored. At 28, I underwent a right hip replacement due to early degeneration. Each issue was treated in isolation. No one saw the pattern. By 2020, my blood counts declined further and I was labeled with Aplastic Anemia. Genetic testing revealed two heterozygous TERT variants, c.2005C>T (p.Arg669Trp) and c.2110C>T (p.Pro704Ser), both classified as variants of uncertain significance. Because they were not definitively pathogenic, the findings were considered inconclusive, and the diagnosis defaulted to something more common. The turning point came from my sister, a biomedical research scientist. She revisited my full medical history, questioned the assumptions, and pushed for telomere length testing. That testing confirmed critically short telomeres consistent with Dyskeratosis Congenita. I began Danazol therapy at 32, which temporarily stabilized my counts. By 33, I required a bone marrow transplant. I underwent transplant at Cincinnati Children’s Hospital Medical Center, a pediatric center with expertise in bone marrow failure and telomere disorders. Their experience and coordinated approach were critical. While my bone marrow stabilized, living with TBD requires ongoing surveillance across multiple organ systems. Through Team Telomere, I was connected with leading experts at the National Institutes of Health, Cincinnati Children’s, and Mayo Clinic. Those consultations shaped decisions about transplant timing, long term monitoring, and risk management. TBDs are complex, often involving bone marrow failure, pulmonary fibrosis, liver disease, and increased cancer risk. Care is rarely linear; it requires weighing difficult tradeoffs with incomplete data. As my understanding of the disease deepened, so did my commitment to advocacy. I began sharing my patient perspective at scientific meetings, including the Team Telomere Micro Meeting at Mayo Clinic. I also advocate for incorporating sibling perspectives into care conversations. Siblings often recall early symptoms and subtle changes that patients normalize over time. In complex disorders like TBDs, those details can change clinical understanding. Professionally, I work in audit and AI governance, a field centered on identifying patterns and asking better questions. Personally, I chose not to let this diagnosis narrow my life. Cycling became both therapy and advocacy. Through Traversing for Telomere Research (TTR), formerly the Million Dollar Bike Ride, I represent our community across Texas. TTR brings individuals together through cycling, walking, running, and other forms of movement to raise awareness and fund patient centered TBD research. Each season, I participate in endurance events including 65-mile gravel races and 100-mile road rides, often completed without stopping. Living with a telomere disorder requires careful training, fueling, recovery, and health monitoring. For me, showing up at start lines is both personal discipline and public education. I serve as Captain of the Southern Region for TTR, working alongside Katie Stevens, Executive Director and Northern Region Captain, and Kevin Kelly, Eastern Region Captain, to expand participation and regional impact. Funds raised through TTR go directly toward high impact, patient centered research, accelerating discovery, improving care, and creating stronger outcomes for individuals and families affected by Telomere Biology Disorders. Living with a TBD means long term monitoring, complex decisions, and uncertainty. It also brings clarity of purpose. I am committed to ensuring that the next person diagnosed with a Telomere Biology Disorder has earlier recognition, clearer answers, stronger evidence, and a more coordinated path forward than I did.