Bethany’s story: Is it better not to know?

“I heard there is something called the neuropathy score,” I said to my neurologist. “It’s supposed to grade how severe your disease is.” “That’s correct,” she said. “It’s on a scale from 0 to 36. Zero being unaffected.” “Do I have a score?” “Yeah, every patient in our clinic with Charcot-Marie-Tooth [CMT] disease is given a score.” I had deliberately brought up this question as casually as possible, but I wanted my score; it was the primary reason I’d come to this follow-up appointment. So while she was playing coy, I was willing to push as hard as needed. Any information they had about my disease-my body-I wanted too. <a href="https://blog.invitae.com/real-stories-bethany-m-f40ea5784bef">Visit Now</a>