“People do not understand that you can see yourself well and live with a chronic illness with intense pains”

Ashleigh Harley has a disability that is not always obvious, but it causes intense pain and does not allow her to eat solid foods

â € œPeople do not understand that you can see well and live with a chronic disease with intense painsâ €?

Ashleigh Harley has a disability that is not obvious at first sight.

With her blond hair, young complexion and brown eyes, Ashleigh Harley fits perfectly in the role of model, influencer of social networks, 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 your case it is a rare disease called  syndrome  Ehlers-Danlos ( ED) , which can cause severe pain, weakness in the muscles and tendons, and can cause the joints to dislocate ..

  • “Police, do not shoot: I am disabled”

“There are 13 different types of SED,” explains Ashleigh. “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 specialist doctors, and her home in central England.

“To be honest, it was quite scary,” he explains, “because at the beginning we did not know what was happening when the disease started. I was blind and paralyzed for a few days . We were all very scared. “

Ashleigh Harley on her horse

Ashleigh is a fan of equestrian jumping.

“But, at the same time, it was a relief to find out what it was that I had. Now, it’s a matter of controlling it. “

There is no cure for this disease, so “controlling” means taking a large number of daily medications and enduring the painful symptoms.

” I can not eat solid foods  and today, I have not even been able to drink water because I keep throwing up. Actually, it’s difficult for doctors to prescribe medication 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 use crutches to walk any distance.

Physical problems that cause him to Ashleigh SED are  suffered two are often  a door  closed s . This has led to feeling discriminated when people comment on how good it looks.

“I say: ‘Well, you did not see me throw up this morning.’ People do not understand that  you can look good  and  live with a  chronic  disease . “

Ashleigh, who wrote and directed a short film science fiction called  The Wall of Lyon (The Wall Lyon), which screened at film festivals around the world, is now working on a new movie,  The Dark Horse (The black horse ), whose objective is to make known their disability.

Medications and sunglasses

There are disabilities that are not so obvious.

He says it took him a long time to find the confidence to talk about his condition.

“They harassed me a lot because I was sick, ” she says of her 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’re not. “

“So it was time to stand up and say that this was the truth.”

Paralympic equestrian jump

Part of the new film focuses on Ashleigh attempts to get the  equestrian jumping is reconocid or as a Paralympic sport .

The 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 freestyle test with music.

The UK team has been very successful in the field, winning more than 30 gold medals.

Ashleigh, passionate about jumping since she was little, says that  this sport helped her to 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 climb and find a way to overcome obstacles.”

After announcing his intentions on Facebook, he says he has received messages from around the world.

“[They] are desperate to compete in the para- jump , but they just do not have the opportunity to do it because  their country does not  support that  sport .”

According to Ashleigh, for the International Paralympic Committee (ICC) to recognize sport, it is required that more than 30 countries organize competitions regularly.

It is a Herculean task, but Ashleigh is convinced that it can be done.

“At this moment, we have Great Britain, Germany, France and Ireland. And there has also been a lot of interest in the United States and Russia. “

Ashleigh Harley and the Olympic torch

Ashleigh Harley wants to get her favorite sport included in the Paralympic Games

And at the end of the month will begin to talk with CPI about it.

Her efforts have been applauded by British Showjumping and its executive director, 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 for their desire to publicize the competition structure to jump that we have established so that like-minded people can participate in it. “

“With the passion, vision and personal drive of Ashleigh to make other nations join, we may be on track to get this sooner than we expected.”

  • “My disabled son had an amazing secret life on the internet”

Although for Ashleigh the final goal, the recognition of the Paralympic jump, is clearly important; what happens on the road, too.

“What I would like to see is that people begin to  look around  without  knew ner life of  others  certainly  is  better “.

“It would be difficult to measure, but if I could change that even a little, I would be happy”

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  370. Hello would you mind stating which blog platform you’re using?
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    P.S Sorry for getting off-topic but I had to ask!

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