Learning Objective #1: Identify four common difficulties of living with Charcot-Marie-Tooth Disease

Learning Objective #2: Describe one example of living with Charcot-Marie-Tooth Disease

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Charcot-Marie-Tooth (CMT) is not a dental problem but it is the most common global neurological hereditary disease. CMT causes damage to the peripheral nerves resulting in muscle weakness and wasting. A qualitative study explicated what living with CMT was like. A convenience sample of 80 respondents (Rs) with CMT completed data entry on a web site. Informed consent was addressed following institution guidelines. With thematic analysis five major themes emerged: a) physically challenged; b) emotion pain; c) social isolation; d) invisible to care providers; and e) uncertainty. Rs expressed physical limitations that provided a challenge. “CMT has no proven treatments, no cure, no definitive prognosis. Every day I think, today is the best physical condition I will ever experience and often it's not good enough for my soul.” Rs expressed emotional pain and distress. “You learn compassion…but you fight with the anger that lies deep within your soul for not being normal.” Rs reported social isolation. “ I can't wear decent shoes, so I don't go out or dress up anymore”. Rs stated care providers were not aware of CMT often resulting in misdiagnosis. “If I had known I had CMT I could have made different choices.” “The psychiatrist said it was neurological and my neurologist said it was psychiatric.” Rs expressed insecurity about their own future, worries about their livelihood and great concern about their children's health. Many had to change the type of work they did. “ My 4 y/o daughter has CMT much more severely than I do and it is really tough.” CMT has far reaching effects on the well-being of people who live with it. The need to insure all health care providers have a basic understanding of CMT is apparent. This project begins to meet that goal.