From Patient to Physician: One UHN Doctor’s Neurofibromatosis Story

Your Complex Brain

Neurofibromatosis, also known as NF, is one of the most common genetic disorders affecting about 1 in 3000 people globally. However, little is known about the condition causing it to often be misdiagnosed or go undiagnosed. Neurofibromatosis causes different types of tumors to form in various parts of the body.
In this bonus episode, Dr. Ryan Thomas, a family physician and Clinical Associate at UHN's Elisabeth Raab Neurofibromatosis Clinic—the only adult NF clinic in Canada—shares his personal journey with NF. Diagnosed in his late twenties, Dr. Thomas underwent a life-changing surgery to remove a large tumor in his chest, just two months before his wedding. His experience provides a unique perspective on the condition, allowing him to connect deeply with his patients.
Additional Resources
Canadian First : UHN Opens Multidisciplinary Clinic on Genetic Disorder
Elisabeth Raab Accelerator of Science to End Neurofibromatosis
Neurofibromatosis Ontario
Dr. Gelareh Zadeh's lab – link to more info about the Elisabeth Raab Neurofibromatosis Clinic
Children's Tumour Foundation

The Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Alley Wilson, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.
The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.
Do you want to know more about the Krembil Brain Institute at UHN? Visit us at: uhn.ca/krembil
To get in touch, email us at [email protected] or message us on social media:
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Thanks for listening!