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Written by Susan   
Dec 19, 2013 at 09:02 AM


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What is MHE?

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 chondro- sarcoma. 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.


MHE Coalition

Founded in 2000, The MHE Coalition is a 501(c)(3) non-profit organization dedicated to providing support and information to those living with this rare bone disorder. Our organization utilizes a multi-faceted approach to achieve our goal of helping to improve quality of life for MHE patients.


 

Support includes development and distribution of information about this condition to patients, families and health care providers; telephone and email support to patients and families; assistance in finding qualified doctors and surgeons, and a website which provides information for patients, researchers and physicians. We Care Packages are sent upon request to children undergoing MHE surgery and their siblings, and annual gatherings are held each summer to provide MHE families with the opportunity to meet others and share experiences and information firsthand. The Bumpy Bone Club provides upon request free membership kits to all children and teens affected by the disorder. Membership includes a subscription to the Bumpy Bone Club Magazine, written for and by kids.


Research is an important focus, and we have participated in and/or provided funding for studies with many institutions, including the University of Texas Houston Medical Center study entitled Hereditary Multiple Exostoses and Pain: To what extent is pain associated with HME?  Results of this study, which have been published in the Journal of Pediatric Orthopaedics, indicated that pain has been underappreciated and must be addressed in the medical care of MHE patients. We provided a grant to Dr. Christine Alvarez of British Columbia’s Children’s Hospital for her study on Quality of Life in HME patients, and many of our members participated in the first phase of this project, which we hope will lead to a better understanding of MHE’s impact on daily life. Health-related Quality of Life in People with Hereditary Multiple Exostoses was published in the Journal of Pediatric Orthopaedics in March of 2012.  Information on all research projects is available on our website.


 

In 2007 the MHE Coalition established an annual educational grant to provide orthopedic residents and fellows the opportunity to attend the Annual Baltimore Limb Deformity Course to learn advanced techniques that will help MHE patients and others suffering from limb deformities.  Grant recipients are selected by the course chairs, and we have received letters telling us how helpful the course was in teaching the planning of deformity correction treatments as well as hands-on training in specific procedures.  On December 24, 2012, Tom MacDonell, husband of our beloved treasurer, Donna, lost his brave battle against cancer. Tom was one of our first members and one of our biggest supporters, and in his memory we have renamed this program The Tom MacDonell MHE Scholarship Fund. Donations made in Tom’s memory will provide a grant to the 2013 course, for a total of 15 orthopaedic residents who have been awarded this scholarship since 2007.  A partial grant of $500 was made in 2014.

 

 

 

 

 

 

 

 

 

 

 

 

 


 

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Last Updated ( Aug 31, 2014 at 06:25 PM )

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