I am 43. Wife. Mother of a 6 year old boy.
This year I had symptoms of slight numbness in my feet and was thinking it was nerve damage from back surgery from eight years ago.
Much to my surprise, I received a diagnosis of Charcot Marie Tooth (aka CMT). A progressive untreatable incurable hereditary neurological diseases in which your feet, lower legs, forearms, wrists and hands atrophy and become ineffective. This disease affects 1 in 2500 people in the U.S. and most likely more since it is often misdiagnosed. Since my diagnosis three months ago, after recent testing, it appears that my mom has this disease and my 6 year old son has a 50% chance of having this disease. All family members, my son, siblings, cousins, nephews, nieces, etc. will have the opportunity to take (very expensive) DNA tests to determine if they too are affected by this horrible disease.
I and my family are relying on healthcare providers that acknowledge, support and guide us through managing the impacts of this disease, both physically and emotionally, as it progresses for the rest of our lives. I will fight the rest of my life for quality healthcare for myself and family. It is essential to our well being.