Hereditary Multiple Exostoses (HME) is a rare bone disorder in which people develop multiple cartilage capped bony lumps (exostoses) at the end of many bones, especially the long bones of the arms and legs. The exostoses grow throughout childhood and may continue to do so in adulthood too. People with HME can experience chronic and acute pain, fatigue and mobility problems, which can be a daily challenge. See below for more information.

Children with HME often have many operations throughout their childhood, they can suffer with chronic pain, psychological trauma, missed schooling, mobility problems and misunderstanding and bullying from their peers.

The meeting and social event in September 2019 will provide an opportunity for sufferers, their families and loved ones to meet others and share experiences and also learn more about HME. We are committed to providing a safe space at the meeting where children and teenagers with HME, and their siblings, can get together and combat the loneliness that can accompany the condition.

This is from one of our members who came to last year's meeting.

"Two of my daughters and my husband all have HME. Until September last year I had never met anyone else outside of my family with the condition. The gathering was literally a life changer, hearing success stories and meeting life long friends that can support and understand you. My daughter (9) has had 6 operations and 10 bumps removed and thought she was alone with this condition. The gathering changed her outlook on HME and she now knows she is not alone. She has made a life long friend that she talks to on the ‘phone all the time and we meet up as much as we can. This would never have happened without HME – The New Generation. If all the parents and children can have the support that me and my family have had it makes dealing with this condition so much easier. This gathering can do that, it can make such a difference."

Please help us to help families like this.

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More about HME

Hereditary Multiple Exostoses affects 1 in 50,000 people. Newly diagnosed families can feel isolated and distressed.

Exostoses vary widely in size and shape. They are usually visible and poke out at awkward angles. They can press on nerves, tendons or blood vessels and cause pain and/or loss of motion.

It is common for sufferers to undergo numerous surgical procedures to remove exostoses that are causing symptoms and/or to correct bone deformities. Limb lengthening procedures are not uncommon.

The psychological effects of HME can be a real problem, resulting in low self-esteem and lack of confidence in body image. Coping with pain, multiple operations and resulting scars can be anxiety provoking and result in low mood.

Although rare (2-5% over a lifetime), a serious complication is that an exostosis can become cancerous.

For more information please email hmetng@gmail.com