Raising Awareness: Understanding Neurofibromatosis

Each year on May 17, the world comes together to recognize Neurofibromatosis (NF) Awareness Day—a day dedicated to increasing understanding of a rare but life-altering group of genetic conditions. NF affects thousands of Canadians and their families, often with physical, neurological, and emotional impacts.

As a family physician, I believe awareness is one of the most powerful tools we have. Through education and early diagnosis, we can help patients access the care and support they need to manage this complex condition.

What is Neurofibromatosis?

Neurofibromatosis (NF) refers to a group of genetic disorders that cause tumors to grow along nerves. These tumors are usually benign but can lead to a wide range of health issues, including:

• Changes to skin appearance (e.g., café-au-lait spots, freckling)
• Learning or developmental challenges
• Nerve pain, balance problems, or hearing loss
• Increased risk of certain cancers in some cases

There are three main types: NF1, NF2, and schwannomatosis. While the symptoms and severity vary, early identification allows for better monitoring and improved outcomes.

Canadian Voices & Community Support

Organizations such as the Tumour Foundation of BC, Neurofibromatosis Ontario, and Association de la neurofibromatose du Québec (ANFQ) have been instrumental in offering support to families, promoting research, and sharing real stories from people living with NF.

As shared by a parent in an NF support network:

“Receiving the diagnosis was overwhelming at first, but connecting with the NF community brought clarity and hope. We gradually learned what to monitor and how to better advocate for our child’s care.”

These personal experiences remind us of the importance of compassionate care and access to accurate, up-to-date information.

Trusted Resources for Support or Learning More

If you’re looking to learn more or support awareness efforts, consider visiting:

• Neurofibromatosis Ontario
• Tumour Foundation of BC
• Association de la neurofibromatose du Québec
• Harvard Health: NF Overview

Final Thoughts

At Country Hills Medicentres, I remain committed to patient-centered care, including support for individuals and families affected by rare conditions like neurofibromatosis. If you have questions, concerns, or would like guidance on accessing specialized care, I invite you to book an appointment.

Let’s use May 17 to raise awareness—and hope—for those living with NF.

Dr. Helen Dion

Family Doctor and GP, Calgary

Currently accepting new patients at Country Hills Medicentres