HME - The New Generation

More about the disorder

 

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.

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

 

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