for people and their families living with the
rare bone disorder, Multiple Hereditary Exostoses
8838 Holly Lane
Olmsted Falls, OH 44138
440-235-6325
CheleZ1@aol.com
www.mhecoalition.com
Multiple Hereditary Exostoses (“MHE”) is a genetic bone disorder in which benign cartilage-capped tumors (exostoses or osteochondromas) grow from the growth plates of long bones or from the surface of flat bones throughout the body. These exostoses can cause numerous problems, including: 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; and an increased risk of developing chondrosarcoma. MHE patients have a 50% chance of passing this disorder on to their children.
It is not uncommon for MHE patients to undergo numerous surgical procedures throughout their lives to remove painful or deforming exostoses, or to correct limb length discrepancies or improve range of motion. Surgery, physical therapy and pain management are currently the only options available to MHE patients, but their success varies from patient to patient and many struggle with pain, fatigue and mobility problems throughout their lives.
The MHE Coalition is a non-profit organization dedicated to finding the causes, treatments and ultimately the cure for Multiple Hereditary Exostoses, and to providing support and information to families living with this rare bone disorder.
Support includes development and distribution of information about this condition to patients and families; telephone and email support to patients and their families; assistance in finding qualified doctors and surgeons; publication of a newsletter focusing on research and clinical issues and areas of concern to our membership; and an informative web site which provides information for patients, researchers and physicians. Our Internet Resource Library contains the largest collection of MHE-related links.
Research is a main focus of The MHE Coalition, and we are involved in ongoing studies with many institutions, including the University of Texas Houston Medical School, University of California at San Diego, Children's Hospital of Philadelphia, and British Columbia's Children's Hospital. We co-sponsored and participated in the first International Conference on MHE and are co-collaborating on the planning of future conferences.
MHE and Me - A Support Group for Kids with Multiple Hereditary Exostoses and Their Families
MHE and Me provides excellent tools and resources for families, doctors and schools of children and teens dealing with MHE, including the MHE and Me Handbook and the Bumpy Bone and Pain Trackers. The site also gives kids a place to express themselves through their stories, poetry and artwork.
www.mheandme.com, mheandme@yahoo.com
The MHE Yahoo Email Support Group
A large group for those seeking interaction, discussion and support with other MHE individuals and families throughout the world
M_H_E-subscribe@yahoogroups.com
The MHE Family Support Group
www.radix.net/~hogue/mhe.htm
HME Yahoo Groups
Hereditarymultipleextosis-subscribe@yahoogroups.com
We maintain contact and exchange information on developments in research with international MHE Support Groups in The United Kingdom, The Netherlands, Japan, Germany and France.
The MHE Coalition is a non-profit organization, incorporated in the State of Ohio. It is only through the support and generosity of our members, their families, and friends that we are able to accomplish our goals. Your donation is tax-deductible.
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Please make checks payable to The MHE Coalition and mail to: Susan Wynn, Vice President,
The MHE Coalition, 14 Stony Brook Drive, Pine Island, NY 10969. Your donation is tax-deductible.
