Hidden disability: The young film-maker shining a light on hidden illness (EDS)

With her blonde hair, youthful complexion and brown eyes, Ashleigh Harley looks every inch the model, social media influencer and budding writer and film-maker.

But, for Ashleigh, that's a problem she is addressing in a new documentary.

Ashleigh is one of millions of people who live with a hidden disability.

In her case, it's a rare condition called Ehlers-Danlos Syndrome (EDS), which can leave people in crippling pain, suffering from weakness in muscles and tendons. It can cause joints to pop out of their sockets.

More at https://www.bbc.co.uk/news/entertainment-arts-48188039

 

rare?

 

The notion of "rare disease" is doing a lot of work. The saying of think horses, not zebras, ignores that there are hundreds of hooved animals that add up to a large number. Almost a thought-terminating cliché. It's "rare" because we don't understand it and we don't understand it because it's not researched so we don't even know if it's actually rare since they're rarely ever counted.

Really past time to address that when diseases that affect tens of millions are still considered rare because what rare actually means in this context is DGAF.

 

Yes, there is a problem here.

The textbook prevalence of EDS is 1/5000. The recent UK Biobank work seems to have turned up a self-reported prevalence of 1/4000. So that is well within expected uncertainty. But the article is suggesting 1/24. Something is adrift here.

I also do not quite understand why someone with EDS would contemplate show jumping. Show jumping is one of the most dangerous sports of all. Normal people are regularly killed during jumping or paralysed by spinal injuries. The serious jumpers use airbags routinely now. Why would anyone with joints that dislocate think of doing this? Or want to promote it as a Paralympic sport? The Paralympic are for people who have suffered the sort of fate show jumpers suffer too often.

?

 

Why does the BBC place this piece under entertainment and arts?
Is it pure voyeurism?

 

Christopher Reeve comes to mind.