I was diagnosed at age 72 after my legs and feet turned numb, although nerve testing showed that had been progressing for years, and if anyone had known what to look for, signs were there from childhood. I also have mild cognitive impairment which might be caused by HNPP. I occasionally have mild lightning bolts in my legs but no significant pain. I have had several surgeries on hammer toes and walking is often fairly uncomfortable. Nerve impairment continues to progress and balance is poor, but I am luckier than many. I don't know if that is because I have a deletion only, or if it is the luck of the draw.