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.
