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Wings of HOPE as we REACH of the
Cure to Multiple Hereditary Exostoses
When trying to locate a Orthopaedics physician,
you may want to ask how many cases of this
disorder have he / she seen in there years of
medical practice, this is a rare disorder and the
more experience the better in most cases.
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

Further detailed Orthopaedic information is contained in the
GREEN Table Below.

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.   

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.  

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 (de
novo ) spontaneous mutation are thus the first person in their family to be affected.

Abnormal scarring with keloid formation after osteochondroma excision in MHE has not been
previously reported up until now. Although this study has limited numbers, the results demonstrate
a statistically significant correlation between keloid formation and MHE. The risk for abnormal scarring
and keloid formation should be discussed with all patients before surgery.
Abnormal Scarring With
Keloid Formation After Osteochondroma Excision in Children With Multiple Hereditary
Exostoses.
Journal of Pediatric Orthopaedics. 27(3):333-337, April/May 2007.
Link to abstract

Some of the synonyms used to discribe this condition: Multiple Hereditary Exostoses
(Exostosis); Multiple Osteochondroma; Hereditary Multiple Exostoses Osteochondromata;
Multiple Carthaginous Exostoses (Exostosis); Multiple Osteochondromatosis; Diaphyseal
Aclasis; MHE / MO / HME
All About MHE / MO / HME  Informational Guides (Table of links located in the tool bar)
Standards of Care Clinical Information Guide: (MHE / MO / HME)Updated 1/26/08
Standards of Care Clinical Informational Video a Follow Up Companion to Guide Updated 1/26/08
Hereditary Multiple Exostoses: A Current Understanding of Clinical and Genetic Advances J.P.Dormans, M.D.
Pain and Bumpy Bone Tracker PDF file that you can type right into for easy use
Lower Limb & Forearm Use of Fixators Guide: (MHE / MO / HME) Updated 1/26/08
Animations / Video Institute for Limb Lengthening & Reconstruction HSS
Fixator Surgery After Care Guide: Up 1/26/08
The ISKD or Intramedullary Skeletal Kinetic Distractor limb lengthening device. It involves the use of an internal
distractor for the purpose of lengthening limbs ADDED 1/07/07
GOOD MORNING AMERICA Story done about a 9 year old young lady, who has MHE who had internal fixator
surgery preformed. 12/31/07
Physical Therapy Guide: (MHE / MO / HME) Updated 1/26/08
Rehabilitation Tips Guide Updated 1/26/08
Preparing For Your Next Orthopaedic Appointment Guide: Updated 1/26/08
Clinical Information Form You can fill out take with you to next doctor appointment
Multiple Osteochondromas: Clinicopathological and Genetic Spectrum and Suggestions for Clinical Management
Pancras C.W. Hogendoorn
, M.D.,Ph.D.
2002 Redefined Definition of MHE by the World Health Organization: Pancras C.W. Hogendoorn, M.D.,Ph.D.
The Hip in Hereditary Multiple Exostoses: D.E. Porter, M.D.
The MHE Research Foundation's X-Ray & Image Gallery
What is Chondrosarcoma ? How its diagnosed & Treatment Guide (may take a few minutes to down load)
Cartilage Forming Tumors Clinical Presentation
Full Musculoskeletal Disease Power Point
Geneva Foundation for Medical Education & Research (MHE Section)
Osteochondroma images pathology(may help you better understand / Illustrate why these tumors can catch and
cause pain
Osteochondroma Radiographs
Radiographs Medical Image database
Disease Data Base, MHE Section
Additional  Orthopaedic & Genetic Information
Doctor Directories
Resource Section~ Internet Links~ SSI~Disability~ Education~ Heath Insurance~ Heath Aids....
If you are Physician  or Genetic Counselor would a second opinion or assistance related to care, the physician
can to email
Sarah Ziegler directly or sign into the physician registry. At that point the MHE Research
Foundation will put the Physician / Genetic Counselor directly in contact with a Physician or Geneticists that
could help sort out the medical issue directly. This assistance is offered to medical professional only. If you are
a patient wanting a second opinion please use the doctor directories located on this website, if after you still
need assistance contact Sarah Ziegler,
What is Multiple Hereditary Exostoses?

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This website is regularly reviewed by members of the Scientific and Medical Advisory Board of the MHE Research Foundation.
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.
 
Written consent must be obtained to attach web pages or the files attached to this website. Please email webmaster.
This web page was updated last on 2/20/08,  4:00 pm Eastern time
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.