MHE Coalition
Founded in 2000, the MHE Coalition is a 501(c)(3) non-profit dedicated to providing support and information to those living with the rare bone disorder Multiple Hereditary Exostoses.
Our organization uses a multi-faceted approach to achieve our goal of helping to improve quality of life for MHE patients and their families. Support includes:
- development and distribution of information to patients, families, schools and health care providers
- assistance in finding qualified doctors and surgeons
- our website, which provides information for patients, researchers and physicians
- our Facebook groups, which enable people from all over the world to communicate, ask questions, get answers, give and get support and make friends
- special programs to help children through this journey, through MHE and Me, the Bumpy Bone Club and We Care
- our annual educational grants to provide High School Seniors scholarships for their first year of college or trade school.
- We are currently collaborating with Multiple Hereditary Exostoses Learning System for enhanced services.
What is 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
- 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
Contact Us
859-940-1218
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mhecoalition@gmail.com
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