Pain is a significant factor in the lives of many people with CMT (Charcot-Marie-Tooth disease, an inherited nerve disorder). Yet despite how common it is within our community, there has been limited guidance to help patients and families identify and address the wide range of pain experiences that come with the condition.

HNF is working to close that gap with the CMT-Connect Pain Webinar Series. Each episode focuses on a specific type of pain, exploring common causes, currently available treatments, and emerging approaches on the horizon. Patient panelists and practicing clinicians share their knowledge and personal experience through interactive presentations and discussions held on Zoom.

Types of Pain Covered

  • Orthopedic and skeletal pain
  • Injury-related pain
  • Nerve pain
  • Muscle cramping
  • Emotional pain

As CMT-Connect Moderator Estela Lugo explains:

“Pain is a multi-faceted topic and must be broken down into smaller, digestible pieces if we’re going to successfully identify and treat it appropriately. No one knows your pain better than you, so the better you are at recognizing its cause and communicating about it to others, the better your chances are of treating it.”

Part 1: Surgery and CMT Pain

The first episode, “Does My Pain Mean I Need Surgery,” featured CMT orthopedic surgeon Dr. Wayne Berberian and aired in January 2021. It is available to watch on the HNF YouTube Channel.

Part 2 of the series, focusing on nutrition and pain, was scheduled to air later in 2021. For more information and resources, visit our patient resources page.