What is Multiple Hereditary Exostoses Syndrome?
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Multiple Hereditary Exostoses Syndrome
Multiple Osteochondroma Syndrome
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.   

These cartilage-capped bone tumors are called Exostoses / Osteochondroma
and may be sessile or pedunculated and vary widely in size and shape.

Pedunculated Exostoses / Osteochondroma is when a stalk is present, the
structure is called pedunculated.  These have a Broccoli like appearance with
stalk and growth towards the end of the stalk.

Sessile Exostoses / Osteochondroma have a broad-base attachment to the
outer bone, called the "cortex". These have a lumpy / bumpy appearance
(When no stalk is present, these are called sessile)

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.  
If you are Physician  or Genetic Counselor would a second opinion or assistance related to care, 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.
Multiple Hereditary Exostoses Syndrome ("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 informational links are contained in the
table below.
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 read full text publication

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; Bessel-Hagen disease; MHE / MO / HME
Figure from J Bone Joint Surg Am.1994;76:986-992
All About MHE / MO / HME  Informational Guides and links
X-ray gallery
GeneReviews®link
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.
Dr. Kevin Jones introduction and Dr. John Dormans
presentation during the 2012 MHE Research Conference
Dr. Dror Paley's presentation during the 2012 MHE Research
Conference
Disclaimer, some of the sides contain operative pictures, also due to
technical issues some of the x-rays located in this presentation are
dark unfortunately were unable to fix this












































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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.
 

This web page was updated last on 3/16/14, 12:0O pm Eastern time
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