MOST have never heard of it, but a young woman from Innerleithen is launching a campaign to raise awareness of Hereditary Multiple Exestosis - HME.

A genetic condition which causes growths at the end of bones, Jordan Daly, 16, has had to deal with ignorance and nasty jibes most of her life.

But now working with Fixers – the national charity that supports young people aged 16-25 to tackle any issue that matters to them, however they choose – Jordan is holding an event aimed at raising understanding of the condition.

Jordan said: “HME means that you tend to get bony spurs at the end of the joint and they can get caught in tendons, muscles and nerves. This causes a lot of pain and causes the joint to lock sometimes.

“I’ve had people say that I shouldn’t have been born, or to go home and die. I’ve even had people knock away my crutches. I can’t actually stand up on my own. So that was quite scary.

“I’m looking at holding an event to raise awareness for young people and raise awareness of HME.” Shona Murray, a consultant surgeon, feels there is a lack of understanding of HME and it affects people in different ways.

She said: “To put it in perspective, it’s a disorder with an instance of about two per hundred thousand of live births.

“It may affect one side of the body. One limb more than the other, so that you get leg length discrepancy for example.” Jordan hopes her event will help raise the level of understanding, but most importantly, help stop people insulting others for their hidden disabilities.

She said: “I’ve created a blog to let everyone know that not all conditions are visible.

“Take me for example, you can’t actually tell that there’s anything wrong with me but the reality is that I’ve got a severe condition.

“If younger people can start to understand the conditions that they fear, they won’t fear it as much. They won’t resort to name calling or physical assaults because they’ll know what that person is going through and understand it a little bit better.” Fixers works with young people across the UK. Each Fixer is supported by the charity’s team of in-house creative professionals to produce a resource to get their chosen message across. Many young people choose to create a short film, website, poster campaign, information leaflet, or hold an event or flashmob.

Fixers has already supported more than 11,600 young people across the UK to have an authentic voice in their community.

Young people have campaigned on issues with Fixers as diverse as cyber-bullying, self-harm, suicide and the need for more random acts of kindness. Fixers aims to work with over 70,000 young people aged 16 to 25 by 2020 to help them to take action and tackle the issues they feel strongly about. Visit www.fixers.org.uk for more information.