A YOUNG woman suffering from a genetic condition has stopped visiting Uxbridge, her favourite place, after being constantly stared at and laughed at.

Charlotte Rigg, 21, known as Lottie, was born with a chronic illness called Ehlers-Danlos Sydrome (EDS), a genetic connective tissue condition.

It is an unpredictable illness, which, on bad days, can leave sufferers with dislocated joints, in huge amounts of pain and seriously fatigued.

EDS is so rare that even medical professionals dealing with Lottie have sometimes been unable to help her.

Just one person in every 5,000 in the UK is affected, according to www.patient.co.uk

Lottie, from West Drayton, said: “My condition is invisible, so to the naked eye no-one would know what is wrong with me.

"I get lots of funny looks and remarks when I am in my wheelchair, or if I am walking funnily.”

Lottie’s condition has become gradually more debilitating. At 15, she gave up tae kwon-do because of the pain.

Then, in March this year, it deteriorated dramatically over a period of two weeks.

She said: “You feel like your world has been shaken up and all you want is for people to be supportive.

“You can spiral into scary depression and I have been there.

“There have been many nights when I have contemplated ending it all.

“So, for people to laugh, point, stare or be rude, can push someone right back down, when they have been climbing for so long.”

Her symptoms became so unbearable she was forced to quit her job as a support worker and use walking aids or a wheelchair every time she left the house.

She said: “I rarely go out any more as the pain can affect my mood and ability to have a good time.

“I have had so many people look at me, laugh, stare and ask rude questions.

“I hate that the most when people laugh and look at you, because if they, or someone close to them, was in this situation, I would like to see if they were still laughing.”

Like many other sufferers, Lottie views the loss of independence as the hardest part of the illness, forcing her to rely heavily on support from those close to her.

She said: “I rely on everyone so much now and I always have someone around whether it is my mum, dad, gran or boyfriend.

“I need someone there in case I fall, or to help me do stuff around the house. When I have dislocations, I need help with everything, even in the shower. Some days I can be bed-bound due to the fatigue or pain.”

Through her online blogs, videos and social media accounts, Lottie is campaigning to raise awareness of EDS and hopes to offer support to other people with the condition.

“It would have been so nice to have someone who could make me feel like things would be all right,” she said.

“So, I am making it my mission to become that person for other people and to be the voice for those with chronic illnesses,” she said.

“I would love to see a change in people's attitudes. For people to treat us normally. Not to be stared at or laughed at like a public display.”

Jenny Morrison, Ehlers-Danlos Support UK helpline and health adviser, says Lottie’s story is all too common and her organisation works hard to educate others about the condition.

“We face a lot of problems when trying to raise awareness, and many of our members also find this difficult,” she said.

“This is down to the fact the condition is invisible and also that it’s not well known, so most haven't heard of it or know anything about it. This includes doctors.”

She added: “Many people's condition can vary from day to day.

“Some days they may be in a wheelchair and other days walking, which it seems many people find difficult to understand, with comments such as ‘but you could walk yesterday!’”

The charity raises awareness of EDS by sending information sheets to doctors, running support groups and holding radio and TV interviews.

There will be events running throughout May 2015, which is EDS Awareness Month.

Jenny Morrison said: “We are doing as much as we possibly can to raise awareness of EDS, and we are getting there slowly but surely.”

For more information about EDS, visit: www.ehlers-danlos.org.

You can follow Lottie’s story on her website www.edslottie.com and on Twitter @edslottie