New research for people with MHE is officially open! Anyone with MHE who is at least 18 years old and within the United States can take the survey here: https://tinyurl.com/HMO-research-survey. There’s more information in the images below, and for any questions that you would prefer to ask privately, please email [email protected].
Facts about MHE
- It goes by several different names
- Multiple Hereditary Exostoses (MHE)
- Hereditary Multiple Exostoses (HME)
- Multiple Osteochondromas (MO)
- It's a genetic bone disorder
- Benign, cartilage capped tumors (aka exostoses or osteochondromas) grow along growth plates or flat bones
- Several other issues can arise from the exostoses. These include:
- compression of peripheral nerves or blood vessels
- irritation of tendons and muscles resulting in pain and loss of motion
- skeletal deformity
- short stature
- limb length discrepancy
- chronic pain and fatigue
- mobility issues
- early onset arthritis
- increased risk of developing chondrosarcoma (a type of bone cancer)
- People with MHE have a 50% chance of passing this disorder on to their children
- Many people with MHE have multiple surgeries to remove exostoses
- There are only three treatment options currently available:
- surgery
- physical therapy
- pain management