CHARCOT-MARIE-TOOTH DISEASE

Charcot-Marie-Tooth Disease (CMT) is the most common type of hereditary neuropathy and affects millions of people worldwide.  Although it may take years to manifest, when and if CMT does appear, it often robs people of the most basic physical abilities, making life more challenging.  The person may develop weak muscles, drop objects, begin to limp, fall frequently, and experience pain physically, emotionally, and socially.

Indeed, living with Charcot-Marie-Tooth Disease is a difficult and frustrating experience.  Not only is there no cure, there are very few effective approaches to treatment. For these reasons, I decided to specialize in assisting people on their CMT journey.  After helping Alison Moore through Health Patterning when she discovered she had CMT and being so inspired by her determination to find a “cure” through establishing the Heredity Neuropathy Foundation (HNF), I knew I was being called to make a contribution as well.  First and foremost, I am committed to providing Health Patterning services to people who experience CMT Disease.  Also, I am a member of the Medical Advisory Board and I bring to the Board my expertise in alternative and complementary therapies.  Along with my colleague and co-principal investigator, Carole Birdsall, RN, ANP; EdD;  FCCM, I conducted HNF’s first research study.  In this qualitative study we asked people with CMT Disease to tell us their experiences.  And tell us they did.  These stories of those who know it best is published as a booklet, What It’s Like to Live with Charcot-Marie-Tooth (CMT) and is available through the HNF website, www.hnf-cure.org  Click here if you wish to hear more about Allison’s story.