Living with Multiple Hereditary Exotoses (MHE)

By Keidi, Multiple Hereditary Exostoses, Canada, August 6, 2019

Hi my name is Keidi and this is my story with Multiple Hereditary Exotoses. (MHE)

It all started when I was 2 when my mom started to notice bumps all down my spine. When my mom took me to my pediatrician, they didn't know what it was so they transferred me to a different hospital who diagnosed me with MHE. MHE is when bone tumors grow outward from metaphysics of long bones throughout the the body. The only thing they can do is carve off the bumps that bug you.

 When I was 8 I had my first surgery in my left lower arm when they removed the whole bone and put a fake one in kept in place with 2 screws nails. After 6 month my arm was back to normal.

My latest surgery was in October 2018 where I had 2 bumps removed one on my right shoulder and the other one on my right leg. I also had 2 growth plates put in my left knee cap because my left leg was longer than my right leg because a bump impacted my growing.

I am now 14 years old and going for another surgery in the next 2 months or so to take out the 2 growth plates so my left leg can continue to grow evenly with my right leg.

I also started to do sports and it is very hard and painful but despite all the pain and disadvantages I have, I still manage to pull through for my team.

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.