Other Information about HME
What's in a name?
When doctors don't understand something, they simply describe it in Greek or Latin. How would you describe HME? Perhaps "lumps on my bones"? Or you might add "inherited from one of my parents"? In fact, that's all these complicated and rather frightening names mean:
- Exostosis
- A lump on a bone, from the Greek words "ex" which means "out of" and "osteon" which means "bone".
- Exostoses
- Lumps (the plural of exostosis is exostoses).
- Multiple Exostoses
- Many lumps.
- Hereditary Multiple Exostoses
- Many lumps, passed on from one of your parents.
- Multiple Hereditary Exostoses
- Same as Hereditary Multiple Exostoses.
- Hereditary Multiple Exostosis
- This name is also used, although it is not really correct since it means "many lump".
- Familial Bony Spurs
- Lumps that run in families (which comes to the same thing).
- Osteochondroma
- A lump of bone and cartilage, from the Greek words "osteon" which means "bone" and "chondros" which means "cartilage" (gristle). Exostoses have a little bit of cartilage at the tip and this is just a more detailed way of describing them.
- Osteochondromata
- Lumps (plural of osteochondroma).
- Multiple Osteochondromata
- Many lumps.
- Osteochondromatosis
- The condition of having lumps.
- Diaphyseal Aclasis
- Another feature of HME, though less noticeable than the lumps. The "diaphysis" is "the bit that grows between" the ends of a bone, that is, the middle part or shaft (as opposed to the "epiphysis" which means "the bit at the end"). "a" means "without" and "clasis" means "breaking". There is disruption of normal modelling, or remodelling of bone.
References to Studies
- The estimate that 1 in 200 children develop an exostosis that needs to be removed by surgery is based on a calculation from the Oxfordshire Musculoskeletal Histology Records 1970-1995.
- The study of HME in the state of Washington, USA is by Schmale GA, Conrad III EU, Raskind WH. The Natural History of Hereditary Multiple Exostoses. J Bone Joint Surg [Am] 1994; 76-A: 986-992.
Links to Other Sites on the Internet
- Contact a Family
- A UK-based charity which helps to bring together families who have children with special needs. Its activities embrace children who have learning difficulties, physical and mental disabilities, rare syndromes and emotional disorders. The HME Support Group is affiliated to Contact a Family.
- UK Email Discussion Group
- A email discussion group has been set up by one of our members for people in the UK with HME. In order to participate, you must first register with Yahoo! Groups. Click here and follow the instructions. To join the discussion type UKHME in the box, click the Search button and then select the UKHME discussion group from the list. Once on the group page, you join by clicking Join This Group in the blue title. You will automatically be notified by email when your request to join has been approved.
- OMNI
- OMNI offers free access to a searchable catalogue of quality Internet sites covering health and medicine. You can find our listing by searching for HME.
- Genetic Interest Group
- The Genetic Interest Group is a national (UK) alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders. The HME SG is a member.
- British Society for Surgery of the Hand
- The British Society for Surgery of the Hand aims to promote and direct the development of Hand Surgery, and to disseminate knowledge of Hand Surgery among members of the Medical and allied health professions. It includes some information for patients and their families.
- The Hogue Family Page
- Some of the members of the Hogue family have this condition and they also have an excellent page about MHE (same as HME).
- MHE and Me
- A support group for Kids with Multiple Hereditary Exostoses and their Families.
- The MHE Coalition
- The MHE Coalition was formed in Februay 2000 to provide support and information to people living with Multiple Hereditary Exostoses (USA).
- Les Exostoses
- The French HME Support Group, set up in November 2002 (in French).
- Multiple kartilaginare Exostosen
- The German HME Support Group (in German).
- Hereditaire Multiple Exostosen Lotgenotencontactgroep Nederland
- The Netherlands HME Support Group (in Dutch, some English pages).
- HME Lotgenoten Contactgroep Belgie
- The Belgian HME Support Group.
- Alliance of Genetic Support Groups
- A US-based organization dedicated to helping individuals and families who have genetic disorders.
- Shakila's Web Site
- An HME web site created by one of our younger members.
There are some more links in the Spring 2000 Newsletter.