Living Beyond Limits: Lesley Holroyd's Inspiring Journey with CAH

Meet Lesley Holroyd, whose life story is a testament to determination and advocacy. Her journey living with congenital adrenal hyperplasia (CAH) is marked by unique challenges and triumphs, and it's a testament to her incredible strength!

Lesley was born in 1957 in England, into a world where resources were scarce. Her birth, assisted by a midwife at home, had an unexpected twist—initially, her parents were told she was a boy. Lesley faced early health challenges, struggling to feed and appearing unwell. A visit to the hospital led to a diagnosis of salt-wasting congenital adrenal hyperplasia (SWCAH). In those days, ultrasounds weren't readily available, so surgery was required to confirm her full female reproductive system. 

Lesley's early days were marked by health difficulties, and for the first two years of her life, she lived in the hospital due to neglectful care from her mother. At the age of 4, she was permanently removed from her mother's care, and her gender was rightfully acknowledged. During this period, Lesley also underwent restorative genital surgery.

Growing up with CAH presented its own set of challenges. Heat intolerance meant being cautious with sports and outdoor activities, as pushing herself too hard could lead to hospital stays. Emotionally, she felt different and was left with unanswered questions about why she needed daily medication. The response she received was both daunting and cryptic: "to help you stay alive."

Lesley's journey toward understanding her condition was a long one. It wasn't until she joined the CARES Foundation and connected with other members that she truly comprehended CAH. What's even more astonishing is that, despite being a registered nurse, Lesley was taken aback by her own lack of knowledge about CAH.

Over the years, Lesley developed an acute awareness of her body's responses to health issues. She knows precisely when to stress dose and keeps regular appointments with her endocrinologists. Her journey with COVID-19 was a testament to her self-advocacy, having experienced the virus three times. Lesley's advice to others is simple but profound: 

"Be your best advocate. Learn all you can about your CAH, keep all your doctor appointments, take your medication, and be under the care of an endocrinologist who understands CAH."

She now serves on the Board of Trustees for CARES Foundation and is a support group leader for ladies over 40. Her advocacy extends to fighting for patients' rights to access all treatment options, including surgery, and she actively participates in several CARES committees. Her dedication is unwavering, attending numerous endocrinology conferences and CARES events, webinars, master classes, and conferences. Lesley has also been part of patient videos and hosts a CAH Awareness walk in Florida.

The CARES Foundation introduced Lesley to the CAHtalog registry, and she was among the first members to join. She is a fervent believer in the power of research to improve the lives of those with CAH. In her words, 

"CAH has come a long way from my birth, and that is all due to research and patients being willing to share their CAH journey."

Looking ahead, Lesley is filled with optimism about the future of CAH. While resources are more accessible now, she believes there's still work to be done in raising awareness within the medical community. Her commitment to advocacy remains strong as she continues to share her experiences, encouraging others to speak up and share their stories.

She doesn't let CAH define her, having traveled extensively across Europe and the USA, and enjoying a loving partnership for 40 years. Lesley has a multitude of hobbies, from swimming and gardening to a deep love for historical buildings and history.

Lesley Holroyd serves as an inspiration to us all. Her story teaches us the power of resilience, self-advocacy, and the profound impact one individual can make in the world of healthcare and rare diseases.