living with HME

I’m not sure how old I was when we first started noticing my disease. When I was young I never really noticed them until I started becoming more self aware. Soon we started noticing the osteochondromas getting larger and larger until some you could see under my skin. When I was in middle school it really inhibited me because I was so self conscious of standing out as the girl with freaky bones or someone making fun of me. Eventually some of them grew to the point it was causing me sever pain when I would exercise or do certain activities. When I was old enough I made the decision with my family to remove a large number of them. Afterwords I lost a lot of the feeling in my leg, most of it has never come back but the quality of my life has drastically improved and I would never go back.