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The MHE Research Foundationis a nonprofit 501(c)(3) Foundation for
researchers, physicians & families dealing with Multiple Hereditary Exostoses a
rare genetic bone disease.
RESEARCH, to help researchers one day find a treatment / cure for MHE. Our foundation works hand in hand with researchers from around the world on this mission.
EDUCATION, to provide clinical information, guides to help benefit both families and physicians.
ADVOCACY, bring awareness about this disease throughout the world.
CLINICAL, to help provide resources to families enabling them to find the medical care they need.
HOPE, the research being conducted on MHE & the informational resources will bring a better quality of life to the families affected by this disease.
What is Multiple Hereditary Exostoses?
Multiple Hereditary Exostoses (“MHE”) also often referred to as
Hereditary Multiple Exostoses (“HME”)
Multiple Osteochondroma (“MO”)
(''MO”) is the preferred term used by the World Health Organization
MHE / MO / HME is a genetic bone disorder in which benign cartilage-capped bone tumors that grow outward from the metaphyses of long bones, growth plates of long bones or from the surface of flat bones throughout the body. Some patients may have as few as six tumors, but most patients develop many more and the numbers of tumors can run into the hundreds.
An Exostosis / Osteochondroma may be sessile or pedunculated.
Sessile Exostoses / Osteochondroma have a broad-based attachment to the cortex.
The pedunculated variants have a pedicle arising from the cortex that is usually directed away from the adjacent growth plate.
The pedunculated form is more likely to irritate overlying soft tissue, such as tendons, and compress peripheral nerves or vessels.
These Exostoses / Osteochondroma's 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 (Life time risk of 2%-5% reported).
It is not uncommon for MHE / MO / HME patients to undergo numerous surgical procedures throughout their lives to remove painful or deforming Exostoses / Osteochondroma's and or to correct limb length discrepancies and improve range of motion.
Surgery, physical therapy and pain management are currently the only options available to MHE / MO / HME patients, but their success varies from patient to patient and many struggle with pain, fatigue and mobility problems throughout their lives.
There are two known genes that cause this disease EXT1 located on chromosome 8q23-q24 and EXT2 located on chromosome 11p11-p12. Approximately 60 to 70 %are located EXT1 gene and 20 to 30% are located EXT2 mutation. In 10 to 20% of the patients, no mutation is found. Offspring of an affected individual have a 50% risk of inheriting the altered gene for hereditary multiple exostoses.
MHE / MO / HME is an autosomal dominant hereditary disorder. This means that a patient with MHE / MO / MHE has a 50% chance of transmitting the disorder to his/her children. This is equal for both male and female patients. Normally this disorder does not skip a generation. Most individuals with MHE / MO / HME have a parent who also has the condition, however, approximately 10%- 20% of individuals with MHE / MO / HME have the condition as a result of a spontaneous mutation are thus the first person in their family to be affected.
All About MHE / MO / HME Orthopaedic Informational Guides Links
Orthopaedics Standards of Care Information Guide:
Orthopaedics Lower Limb & Forearm Use of Fixators Guide:
Fixator Surgery After Care Guide:
Hereditary Multiple Exostoses: A Current Understanding of Clinical and Genetic Advances J.P.Dormans
Preparing For Your Next Orthopaedic Appointment Guide
Physical Therapy Guide:
Management of Chronic Pain Guide:
Gene Reviews additional Orthopaedic & Genetic Information
All About MHE / MO / HME Genetics Informational Guides
Simplified Genetics Guide:
website is regularly reviewed by members of the Scientific and Medical Advisory
Board of the MHE Research
The MHE Research Foundation, we comply with the HONcode standard for health trust worthy information: By the Health On the Net Foundation. Click here to verify.# HON Conduct 282463 and is linked on the NIH National Library of Medicine, Directory of Health Organizations (SIS) website, as well as the link for Patient Information on The Diseases Database a cross-referenced index of human disease, and the Intute: health & life sciences a free online service providing access to the very best Web resources for education and research located in the UK.
The MHE Research Foundation is proud to be working with the EuroBoNeT consortium, a European Commission granted Network of Excellence for studying the pathology and genetics of bone tumors.
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Disclaimer: While many find the information useful, it is in no way a substitute for professional medical care.
The information provided here is for educational and informational purposes only. This website does not engage in the practice of medicine. In all cases we recommend that you consult your own physician regarding any course of treatment or medicine.
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This web page was updated last on 3/21/07