The Human Phenotype Ontology (HPO) provides the following list of features that have been reported in people with this condition. Much of the information in the HPO comes from Orphanet, a European rare disease database. If available, the list includes a rough estimate of how common a feature is (its frequency). Frequencies are based on a specific study and may not be representative of all studies. You can use the MedlinePlus Medical Dictionary for definitions of the terms below.
|Signs and Symptoms||Approximate number of patients (when available)|
|Abnormality of the humerus||90%|
|Abnormality of the tibia||90%|
|Abnormality of the femur||50%|
|Abnormality of the metaphyses||50%|
|Abnormality of the teeth||50%|
|Abnormality of the ulna||50%|
|Aplasia/Hypoplasia of the radius||50%|
|Cranial nerve paralysis||50%|
|Abnormal pyramidal signs||7.5%|
|Abnormality of pelvic girdle bone morphology||7.5%|
|Abnormality of the pericardium||7.5%|
|Synostosis of joints||7.5%|
Prognosis and long-term survival can vary greatly from person to person. Generally, the prognosis for a person with HMO is favorable. Most often, osteochondromas stop growing at skeletal maturity.Most individuals with HMO have at least one surgery and many have multiple surgeries. Painful osteochondromas that do not affect the surrounding bone can simply be removed. Complete removal can help to avoid recurrence of the tumor and abnormal bone growth. Osteochondromas that affect the surrounding bone, tissues, and/or nerves may be more difficult to remove and the outcome of surgery depends on the extent of the disease, the size and location of the tumor, and the tumor’s response to therapy. If an osteochondroma becomes a cancerous tumor (osteosarcoma), the outcome is also less certain. Prompt medical attention and aggressive therapy are important for the best prognosis. Continuous follow-up care is essential for a person diagnosed with multiple osteochondromas.
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD. Suggest an organization to add.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Fourth International MHE Research Conference
Thursday, November 1, 2012 -
Sunday, November 4, 2012
Location: Philadelphia, PA
Description: The goals of the conference are: 1)-to provide a forum to share the most recent and unpublished findings in these areas amongst the major laboratories working on MHE; 2)-to share this knowledge with experts in closely related fields who can provide critical input and fresh perspectives, and be inspired to work directly on this debilitating and potential serious pediatric disorder individually or in collaboration; 3)-to develop an understanding of the medical and clinical complexity of MHE as thoroughly as possible. MHE children also have additional and potentially debilitating pathologies. This requires the concerted effort of experts in orthopaedics, genetics, enzymology, glycobiology and developmental and cell biology; and, 4)-to share insights gained in animal model systems and in MHE human specimens.
Contact: Bernadette Tyree, Ph.D., (301) firstname.lastname@example.org
Co-funding Institute(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases, Office of Rare Diseases Research
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
Is there information available about the risk of cancer in people with hereditary multiple exostosis? I would like to know what testing etc is required if this is suspected. See answer
I have hereditary multiple osteochondromas. My granddaughter has been having swelling of her joints with pain in her hands. I am suspicious that this may be a manifestation of my disease. I had always been under the impression that my children did not have this disease. My father was the one who passed the disease on to my sister and I. I would like to find someone that would like to help me follow up on this and to find out if this could be present in my daughter or grandchildren. See answer
I have multiple osteochondromas and experience severe pain in both of my legs. I have had surgery on my left leg, but still have pain in that leg. What can I do to solve this problem? See answer