At the end of last year I was referred to an orthopaedic consultant who happened to have a special interest in this area and was finally given a diagnosis and explanation. For four years I have been suffering from ME. As well as lots of other symptoms I am chronically tired and ache all over.

I am now wondering if there is a connection? My consultant says that not enough is known about either condition so he cannot say.

Is anyone else in the same position? If so, how has their ME coped with surgery? I am due to have an operation to my ankle and am concerned it may cause my health to deteriorate.

My email is Susan.MacDonald@bushinternet.com

and from Overseas ... via the HMESG website

I am 30 years old and have been through five operations. Most of them in my child hood, but the most recent in 1997, I had a tumour the size of my fist removed from my hip socket. I was NEVER given any further information to my condition beyond the fact that I had bumpy "bone growths". Gee......ya don't say.....This entire web site has blown me away. I can't believe that by punching "multiple osteochondroma" into my search engine would yield so much information. (I just got a computer) I would like to get in contact with people that are up front about this disorder (I hate the word disease) I have noticed that some growths are growing, and causing new discomforts. The information that I have received today has been very helpful.

I have not known anyone else to have this disorder but my mother, and just last week she wrote down the term multiple osteochondroma for her own knowledge. Scary. What does that tell you! We were just told from our doctor that they are "bumps", and that is all that we have understood about it. I have always felt like some kind of "medical rock star" Any new doctor I visit always has to pull out their text books when I walk in. Yeah, it's a pain in the....well....numerous places ;-), but for the most part I have persevered just fine.

My left arm is roughly 12 inches shorter than the other is and my left leg is about three inches shorter. I walk with a noticeable limp when I exert myself and I start to get stiff. This is weird talking about like this, but regardless of my ummmm... disability, I have accomplished some pretty cool things. I have been a contracted artist for seven years doing dinner theatre in Canada, and other venues. I am a "professional singer" (it may not pay the rent right now, but I got some sensible shoes!) And I work as an educational tour co- ordinator for a Canadian travel company. I guess what I am saying is that I was teased a lot from other kids growing up because I physically different, as a lot of these young kids on this web site probably face daily. (Kids are SO cruel) But if there is one sure-fire way to alleviate ignorance, it is through education.

This web site is a God send.

Ian Kehler, Edmonton Alberta shangrilaboyz@hotmail.com

Out and about with...

Travelling Costs It has been published in the Contact a Family summer newsletter that they have not been successful in persuading the Department of Health to introduce a new scheme which would allow parents to claim for the costs of visiting their children in hospital. However, the Department of Health have agreed to carry out a review of the existing schemes and Contact a Family has been asked to contribute to it.

Our website The website has now been awarded the HonCode by the Health on the Net Foundation. For more details please see our home page. Thank you to David for all his hard work in maintaining the website.

Debbie Errington Debbie suggests that for an alternative pain relief we should be using wheat bags. Apparently you put them in the microwave to warm them through and apply directly to the pain site. Ask at your local pharmacy for more details.

Silicone Patches Has anyone tried these. They are the patches that can be bought at the chemist and applied to scar tissue. Should you complete the course they can fade any scarring. I am in two minds whether to buy them and would like to hear from anybody who has tried them and could tell me a bit about them. Send any information to the editor for insertion into next issue of newsletter.

Pens For Sale

We have for sale, at a brilliant £1.20 each, HME logo pens. They were purchased due to the donation from the darts evening. The pen has a chunky trunk with a rubber grip. Our logo goes around the middle of the pen on a red background with happy smiley faces embossed onto the background. A few faces are in a bright yellow. All our details appear on the pen, name of the group, our telephone number, our web site and our charity number.

If your friends and family would like to help us raise money for HME we would be truly thankful.

Should you wish to purchase these super pens please phone us on 01438 86186 for details of how to order. How about buying a batch and selling them at a local event? – all for a good cause.

Editor's Bit!

Thanks to everyone who submitted pieces for this issue of our Newsletter. I am extremely grateful.

But, I NEED MORE, so calling all new and present members, your mission should you choose to accept it is to write, or type, a few lines about anything you wish to be printed within the next newsletter.

It does not have to be a work of art; it does not have to be humorous. You may feel that we would not be interested in what you have to say, or you may feel that your condition is not as severe as others and think that we would not want it. Rubbish!!!

It does not even have to be about HME it can be about your summer holidays or what you are all going to get up to at Christmas. We love to hear from all of you, young and old. This is your newsletter, use it to fill it with the information you want to read about.

So quite possibly in the next few weeks I shall have piles of articles coming through my letterbox, a grumpy postman for having to work double hard and a great big smile on my face.

I cannot wait to hear from you all.

Bye for now

Debi Roper

Research... Research... Research...

Copies of the following papers are now available. If you would like one, please send an A4 size stamped addressed envelope to the HME Support Group.

"The Hip in Hereditary Multiple Exostoses" D E Porter, M K Benson and G A Hosney

"Hereditary Multiple Exostoses: a qualitative study exploring families' and patients' perceptions of disease impact and self-expressed needs." Maria Fraser and Daniel E Porter

HME School Leaflet, a leaflet aimed at schools with informative and precise information.

UK HME email chat group

To join this interesting discussion group – go to http://www.yahoogroups.com and type UKHME in the search box. Then fill in registration details which will be sent and approved.

We want to hear from YOU!

Submissions of articles and comments to:

Debi Roper
7 Moreton Road
Aston Upthorpe
Nr Didcot
Oxon
OX11 9EP

by the end of January 2003 please!

Moving House?

Please don't forget to let us know when you change your postal address, telephone number or email address. 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

PO Box 395
Headington DO
Oxford OX3 9WF
United Kingdom
Tel. +44 1438 861 866
Email: support@hmesg.co.uk
www.hmesg.co.uk/

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