Congenital Myopathy

I learned today that I have congenital myopathy.  I have told a few friends, and a few family members.  I passed this on to two of my children.  My husband also has a genetic disease, on the same gene, that he passed to our children.  They have two unrelated conditions; the shared, combined condition from their parents, and an unaffected sibling.

I begin this journey myself with adult neuromuscular specialists as a new patient.  I'll be joining the MDA.  I'll be beginning a new phase in my life: the phase of knowing what has always been different about my body.