How MHE Affects the Body


MHE usually manifests during early childhood more commonly with several knobby, hard, subcutaneous protuberances near the joints.

The likelihood of involvement of various anatomical sites as observed in a large series is as follows:


Anatomical location & Percentage involvement:

  • Distal femur: 70%

  • Proximal tibia: 70%

  • Proximal fibula: 30%

  • Proximal Humerus: 50%

  • Scapula: 40%

  • Ribs: 40%

  • Distal radius and ulna: 30%

  • Proximal femur: 30%

  • Phalanges: 30%

  • Distal fibula: 25%

  • Distal tibia: 20%

  • Bones of the foot: 10-25%

Click on the body part names for more information

What Parents Should Watch Out For


  • If your child is limping, check to see if it is due to an injury, or is something that is occurring and continuing without obvious reason.   Limping may signal a limb length discrepancy or other problem.

  • Bowing of one or both legs

  • Mobility problems.  Is your child experiencing pain when walking or running?

  • Pain.  Is your child experiencing pain from exostoses that bump each other?  Is your child experiencing pain during certain activities, or pain at night.  If so, keep a pain diary.

  • Any red flags in terms of sudden increase in size of swelling, pain, nerve compression, tingling, numbness, or weakness.



What Adults Should Be Aware Of:


  • Sudden growth in an existing exostosis and pain can be symptomatic of a malignant transformation.  It is smart to check out any changes with your orthopaedist.  However, it is important to remember that chondrosarcoma is rare.

  • Years of wear and tear on joints can result in chronic pain.  There is also the possibility of exostoses irritating or catching on overlying tissue, such as muscles, tendons, ligaments, or compressing nerves. Possible Treatment Options for these common problems, include pain medications, physical therapy (including stretching, strengthening and modalities), heat, rest, bracing (supportive orthosis acting as load sharing devices) etc.

​© 2015 by MHE Coalition.

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Thank you to Nicole Wynn for designing our logos and contributing her original artwork to our website and our hand-outs.  Nicole is a talented graphic designer who just happens to be living with MHE... you can visit her website at

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