When the UK HMESG was first formed there did not appear to be much activity on the internet in connection with HME. There was one US Group which had been formed for some time, but we were not sure if it was still active as no replies were received to emails.

We decided to set up our own website and immediately became inundated with emails from HME sufferers and their families all over the world - people who had been looking for information and contacts for years. We decided to set up a noticeboard on our website so that people (especially those overseas) could get some contact with others in similar situations and we always answer emails. There are now some new groups to tell you about.

Firstly, the original US Group has come to life again. This is called the MHE (multiple hereditary exostoses) Family Support Group (http://www.radix.net/~hogue/mhe.htm). It is run by Evelyn Hogue (hogue@radix.net). They have decided to link to a much larger organisation called the Ollier/Maffucci Self-Help Group in the States to help with resources etc and Evelyn is feeling very positive about the future of the Group.

Susan Wynn and Cassie Esselink live in the USA and got in touch with each other through our noticeboard. They have set up a group called MHE and Me which is aimed at children and their parents (http://www.geocities.com/mheandme). It is a place where, with your permission, your children can put messages, poems, stories etc and be in touch with other children affected with HME. Susan's email address is mheandme@yahoo.com.

The MHE Onelist email Support Group was founded by Bill Daniels, an HME sufferer in the USA. He started with his own website and then decided that an online email support group was needed. This now has more than 70 members and it provides, what is like, an ongoing discussion. Basically, there is a list of members and if one member sends an email it is sent to all members and posted on the day's message board. People then respond and a discussion begins, a query is answered or simply experiences are shared and symphathised with. You can join the email list by going to http://www.onelist.com and then typing in M_H_E in the search field. There is also a Chat Site for members to meet on a regular basis; this is like a telephone conversation on screen for two or more people. For more information contact CheleZ1@aol.com.

A lady called Dawn Dibbles found it so difficult to find any information on HME and other sufferers in the past that she decided to set up a Yahoo! Club and HME Webring. By providing a list of links she hopes to help people find the information they are looking for. The Webring is at
http://members.tripod.com/~Dibbles_2/hmewebring.htm
and the Yahoo! Club is at http://clubs.yahoo.com/clubs/hereditarymultipleextosis.
Dawn can be contacted at Dibbles898@aol.com.

All of the these US groups interact with each other and have just produced a newsletter. They have organised a get together in Lebanon, Indiana in February which is being hosted by The MHE Onelist email Support Group and we wish them lots of luck for this and the future.

Moving away from the USA, there is an HME Support Group in the Netherlands which has a website (http://www.patientenbelangen.nl/hme.htm). It is in Dutch, but more information can be obtained from Dio Hemmelder (in English) on dio.a.hemmelder@is.shell.com.

It is amazing how much has been achieved in such a short time and I hope you enjoy visiting the different sites, however, please note that the UK HMESG is only responsible for its own site and we have not checked out all sites or links mentioned above. The internet is known to provide medical information that is not endorsed by official medical boards.

Happy surfing!

Helen Small

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