“People don’t understand that you can look good and live with a chronic illness with severe pain.”Ashleigh Harley has a disability that is not always obvious, but it causes severe pain and does not allow her to eat solid food

"People don't understand that you can look good and live with a chronic illness with severe pain."
Ashleigh Harley has a disability that is not noticeable at first sight. With her blonde hair, young complexion and brown eyes, Ashleigh Harley fits perfectly into the role of role model, social media influencer, budding writer and filmmaker. That is precisely the problem he wanted to talk about in a new documentary. Ashleigh is one of the millions of people living with a  hidden disability . In his case it is a rare disease called  Ehlers-Danlos syndrome (SED), which can cause severe pain, weakness in the muscles and tendons, and can cause the joints to dislocate. “Police, don’t shoot: I’m disabled” “There are 13 different types of EDS,” Ashleigh explains. “And there are 255 million people in the world with all the different subtypes. The result is a very poorly understood disease. ”She  was barely 12 years old  when she was diagnosed with SED, something that happened after months of round trips between London, where her family took her to see medical specialists, and her home in Central England. “To be honest, it was pretty scary,” he explains, “because at first we didn’t know what happened when the disease started. I was blind and paralyzed for a few days. We were all very scared. ”Ashleigh Harley Ashleigh is a fan of equestrian jumping.“ But, at the same time, it was a relief to find out what I had. Now, it’s a matter of controlling it. ”There is no cure for this disease, so“ controlling it ”means taking a lot of daily medications and enduring the painful symptoms.“ I can’t eat solid foods and today, I haven’t even been able to drink water because I’m still vomiting. In reality, it is difficult for doctors to prescribe medications that I can tolerate because I have allergies to intravenous drugs. ”The deformation in her spine was also caused by the disease, which sometimes forces her to resort to crutches in order to walk any distance. What is Ehlers-Danlos syndrome? Ehlers-Danlos syndrome affects the connective tissue that supports the skin, joints and bones. Symptoms include joint hypermobility, dislocations and elastic skin. People with the condition can bruise and fracture easily, and they often have chronic pain. Source: NHS – Ehlers-Danlos syndrome. The physical problems that SED causes to Asleigh are often suffered behind closed doors . This has led to her feeling discriminated against when people comment on how good she looks. “I say: ‘Well, you didn’t see me throw up this morning.’ People don’t understand that  you can look good  and  live with a chronic illness. ”Ashleigh, who wrote and directed a science fiction short film called  The Wall of Lyon  , which was screened at film festivals around the world He is now working on a new movie,  The Dark Horse , which aims to raise awareness of his disability. Betty Images There are disabilities that are not so obvious. He says it has taken him a long time to find the confidence to talk about his condition.”They harassed me a lot for being sick, ”he says about his childhood. “As a result of that, I felt terrified to tell someone. But then I realized that there was no point in trying to be something you are not. ”“ So it was time to stand up and say that this was the truth. ”Paralympic equestrian leap Part of the new film focuses on Ashleigh’s attempts to get the  equestrian jump recognized as a Paralympic sportThe equestrian events were included in the Paralympic Games for the first time in 1996 in Atlanta and are open to athletes with any type of physical or visual disability, but the disciplines are limited to training events, a championship of established movements and a test of Freestyle with music.The UK team has been very successful in the field, earning more than 30 gold medals.Ashleigh, passionate about jumping since she was little, says that  this sport helped her cope with the impact of her illness“I wanted to overcome my physical limitations. I think many people in my situation want that, ”he says. “One day I went to my parents and said: ‘I really want to ride.” “I realized that, despite my limitations, I can still go up and find a way to get around the obstacles.” After announcing their intentions on Facebook, he says he has received messages from all over the world. “[They] are desperate to compete in the para-jump , but they simply do not have the opportunity to do so because  their country does not support that sport.“According to Ashleigh, in order for the International Paralympic Committee (ICC) to recognize the sport, more than 30 countries are required to organize competitions regularly. It is a Herculean task, but Ashleigh is convinced that it can be done.” Right now, we have to Great Britain, Germany, France and Ireland. And there has also been a lot of interest in the United States and Russia. ”Ashleigh Harley Ashleigh Harley wants to get his favorite sport to be included in the Paralympic Games and at the end of the month he will start talking to CPI about it. His efforts have been applauded by British Showjumping and his CEO, Iain Graham, said: “Ashleigh is incredibly inspiring, not only because of the way she refuses to let her disability stop her from participating in the sport she loves, but also because of his desire to make known the jump competition structure that we have established so that like-minded people can participate in it. ”“ With Ashleigh’s passion, vision and personal drive to make other nations join, it’s we may be on our way to achieve this sooner than we expected. ”Although for Ashleigh the final goal, the recognition of the Paralympic jump, is clearly important; what happens along the way, too. “What I would like to see is that people start to the recognition of the Paralympic jump is clearly important; what happens along the way, too. “What I would like to see is that people begin to the recognition of the Paralympic jump is clearly important; what happens along the way, too. “What I would like to see is that people begin to looking around without assuming that other people’s lives are surely better . “” It would be difficult to measure, but if I could change that even a little, I would be happy. “

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