Adam Grisenthwaite
14 Legh Street, Patricroft, Eccles,
Manchester M30 0UT
lgrisenthwaite@onetel.net.uk

My name is Susan Steggles-Cole, I am 24, and am averaging I guess two or three operations a year. I know I have quite a severe form of this disease because my dad has it also and yet rarely has been operated on. I have had every part of my body imaginable operated on and have researched a fair amount and so would consider myself quite an expert on the subject. I would however like to hear from an older person who also has a severe form of the condition as I would like to know if the amount of operations etc decreases. I was told by a so- called "expert" that the lumps would stop growing when I stopped growing, however the lumps are still growing at quite a rate and so now consider this statement fictitious, therefore I would like to here from a true expert, i.e. a fellow sufferer on the subject.

Regards
Susan
56 Shooters Hill Road,
Blackheath, London SE3 7BG
susan@steggles.net

Please keep your letters coming for the Noticeboard. Thank you!

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.

Our Next Meeting

Saturday 20 October 2001
10.30 am - 4.30 pm
The Holiday Inn Birmingham Airport

Details from Sarah Nicholls
01590 643369

We want to hear from YOU!

Submissions of articles and comments to Debi Roper at 7 Moreton Road, Aston Upthorpe, Nr Didcot, Oxon OX11 9EP by the end of November 2001. Thank you.

Disclaimer

Please note that any views expressed herein, by individual group members, are not those of the Group as a whole and separate entity.

HME Support Group

1 North Place, Headington, Oxford OX3 9HX, UK
Tel. +44 1865 751332
Email: support@hmesg.co.uk
www.hmesg.co.uk/

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