I have learnt to live with the condition. As a child I must have used it to my advantage. It was always a topic of conversation. I was able to evoke sympathy and my 'street cred' was high. If there was something I did not want to do a 'twinge' would suddenly appear. By feigning an injury I got immediate attention. It did not prevent me from playing 5-a-side football. At this time, there was little known of the condition.

By senior school the lumps and bumps began impairing mobility, they became more noticeable and more difficult to hide. They also caused me unbearable pain if knocked.

By the late 60s and early 70s I required surgery for the larger lumps. I had surgery on both knees, and ankles and my right shoulder. There was also an attempt to straighten my right arm. I have had no further treatment for the last 10 years but suspect that my right knee will require attention in the future.

Emotionally, HME has not been a problem; I could always cover my limbs. To my sister though I think it has, at least visually. It was only after I got married and we started a family that the need to know more became important. We gathered lots of information and talked about the potential difficulties, but never at any time did it put us off.

It was only after we had gone for an appointment at the Manchester Children's Hospital, Department of Genetics that we were able to find out more about the condition. I learnt more there in an hour than in an entire lifetime. It was through them that we became aware of the support group.

By bringing people together with a common aim, by being able to talk with others on shared experiences does make a big difference. I JUST WISHED THE Group had been around 10 or 20 years ago.

Stephen Watson

Case History

I am a healthy single, due to my bone problem, retired professional lady, now 71 years old and have had HME all my life. The bony spurs are all over my body, internally and externally, but only one has been surgically removed. This was 30 years ago when a 10 cm growth was successfully removed following a fall I had in the bath. The fall resulted in a complete break of the exostosis at the point of join to my hipbone. Its removal was a great blessing to me and gave me much better walking and mobility in general. I am very active and healthy. In my late teens and twenties I played competition tennis. Though I am unable to neither swim nor ride a horse/bicycle, due to my changed shape.

The condition was evident in my father and paternal grandmother. I am an only child, though I can recognise these lumps in two of my cousins.

This condition involved a fair degree of pain in my younger, growing years. However, since reaching adulthood I have been completely pain free.

Name & Address withheld

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