Patient Stories

Whether you are a caregiver, family member, pediatrician, or other healthcare provider interested in CMT4J, learn more by reading these stories from families living with CMT4J.

Navigating a Rare Diagnosis in Adulthood

Navigating a Rare Diagnosis in Adulthood

After living with progressive symptoms for the early years of her life, Brittany was officially diagnosed with CMT4J later than most patients. She approaches her condition as an element of her life, which she works daily to manage, but not as the defining one.

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Knowledge is Power

Knowledge is Power

For Sabrina, Will, and their daughter Kinley, gathering knowledge on CMT4J has made all the difference in their journey. Kinley’s family is determined to live life to the fullest in the face of this rare, progressive disease.

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Preparing For What Comes Next

Preparing For What Comes Next

Ethan and his family imagine a future in which Ethan’s rare type of Charcot-Marie-Tooth disease, 4J, is understood by physicians, insurers, and patient families alike. Ethan began coping with his disease at a very young age and, along with his family and care team, has spent years since trying to predict and prepare for what’s to come.

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