Growing Up with CAH and the Importance of Community Support

Allyson Kraff was diagnosed with congenital adrenal hyperplasia (CAH) within 24 hours of birth, meaning she has never known life without it. For her, managing CAH is just a normal part of daily living, even though it requires lifelong medication and extra caution with physical activity. Despite these challenges, she remains grateful for her condition, as it has shaped her into the person she is today. It has also taught her valuable lessons about assessing risks and rewards in life.

One of the biggest challenges she currently faces is transitioning from pediatric to adult endocrinology care. At 24 years old, Allyson has struggled to find adult endocrinologists in the New York City area who specialize in CAH. Those who do often have waiting lists that extend beyond a year. As a result, she continues to see her pediatric endocrinologist to ensure she receives proper treatment. Fortunately, her medication regimen has remained stable for nearly a decade, although managing her CAH alongside epilepsy has required adjustments to both her steroid and seizure medications.

For those navigating CAH, Allyson highlights the CARES Foundation as an essential resource. Her family has been involved with the foundation since its early days, and she credits it for providing a strong community, supporting research and advocating for important initiatives like newborn screening for CAH.

She emphasizes that while CAH presents unique challenges, children with the condition should still be encouraged to pursue their passions. Her own experience as a multisport athlete — playing soccer, softball, golf and eventually swimming through college — illustrates that kids with CAH can lead full, active lives with the right precautions. She reassures parents that while it’s normal to feel nervous, it’s important to let their children explore, learn and grow without unnecessary limitations.