Thread by @ekverstania

It's #EDSAwarenessMonth and I am one of those people who bizarrely feels like I don't 'deserve' a diagnosis because I don't have a full house of Beighton symptoms and I am not as badly off as my friends, even though I subluxate my shoulders every night, live in constant pain...

...and have been worried for the last five years that I may dislocate my jaw.

Right now I am fundraising for a woman in my city whom I have never met who is dying from the cascade of health issues that comes from being medically gaslighted for so long (even though she worked in a hospital before)...

...and having her government (GEMS) medical aid cover prescription medicine, but not supplements; and she is dangerously low on iron, but they don't pay for that. They will pay for her pain medication. A SASSA grant is not enough to live on if you need supplements to live.

So, as things stand now, Gafsa will die sooner rather than later, leaving her father and teenage daughter.

You can quibble as much as you want about politics; I just don't want people to die from poverty. And this is dying from poverty.

She's been discharged from hospital, incontinent, with 35% lung function and ulcerative colitis, and I KNOW that money could have prevented it from getting this bad so early in her life.

But there's also this: the years it took her to be believed.

https://twitter.com/Asher_Wolf/status/1388525315039760385?s=19

#EhlersDanlos Syndromes are COMMON.

Connective tissue disorders are COMMON.

They are particularly common in autistic people.

They are NOT commonly diagnosed.

My estimate of what it would take for her to live a lot more comfortably for a good deal longer? Approx. $280 per month. Because that's over R4,000, and it would buy occasional visits from a caregiver to help her bathe and tidy up, AND some supplements, AND incontinencewear.

The South African government should be sponsoring its incapacitated citizens, and ESPECIALLY its former employees, with amounts like this, if their lives depend on it. And hers does. She can only type with ONE FINGER now.

I have Gafsa's permission to share anything and everything about her condition, because even if it is too late to save her, perhaps at least it can help someone else.

This is Gafsa in hospital a few days after being admitted. Dark circles beneath her eyes show iron deficiency.

Gafsa is in a lot of pain. Here's a swollen ankle and foot.

The thing is, though, I am kind of tired of having people suffer and die and become poster girls and boys for awareness campaigns about what killed them. Like Jason, who died a year ago from malignant neuroleptic syndrome following a medical error.

https://twitter.com/ekverstania/status/1350551686520197121?s=19

I want public healthcare professionals in the @WestCapeHealth and in private practice to support #EDSAwarenessMonth, because they are the gatekeepers.

And I want patients to do most of the teaching.

I repeat: #EhlersDanlos Syndromes are COMMON.

They are RARELY DIAGNOSED.

This is not the only common-but-rarely-dianosed condition on my list for the training plan I hope to present to government along with other members of the Western Cape Network on Disability.

But it's #EDSAwarenessMonth now, so let's focus on #EhlersDanlos Syndromes for now.

Herewith once again my favourite and most shared patient account of #EhlersDanlos Syndrome, written by @H2OhTwist: ohtwist.com/the-chronic-co…

While not all autistic people have #EhlersDanlos Syndrome (EDS) and not everyone with EDS is autistic, it should be standard practice to screen people with the one diagnosis for the other.