hypermobilityspectrumdisorders

We are committed to working with our community to dismantle inequities in healthcare as we continue to strive in our mission to give hope to and improve the lives of people affected by EDS and HSD.

Currently, we are working to create a comprehensive understanding of how race, gender, sexuality, age, body shape, mental health, disability, economic situation, and other identities and lived experiences can impact access to care, diagnosis, and understanding.

As part of our Breaking Down Barriers initiative, we are looking to actively play a role in diversifying the public medical imagery of people living with all types of EDS and HSD. For example, one of the minor diagnostic criteria for vEDS is “translucent skin” has historically been misinterpreted to mean “pale.” instead of the increased visibility of typically hidden features such as veins or tendons through the skin.

For Ehlers-Danlos syndrome and hypermobility spectrum disorders, there is a major problem with diversity understanding and the way that symptoms are displayed on non-pale skin. With this, we have seen discrimination, lack of diagnosis, and improper care due to white skin bias and lack of proper research within the global EDS and HSD community. Inspired by Malone Mukwende’s initiative to diversify medical imagery and Chidiebere Ibe’s priority to decolonize curriculum through amplifying the need to explore how symptoms present on darker skin tones, we are seeking your help.

We know that EDS and HSD affect people with all identities and we want your help in ensuring that we are properly representing YOU. Together, we can create a larger reach, training information, and accessible imagery that will further reduce misunderstanding of diagnostic criteria and delay to diagnosis.

To assist in clarification and boost representation, we are launching the Breaking Down Barriers: Representation in Medical Imagery. We invite you to submit photos of your EDS and HSD symptoms that potentially vary with skin tones, body types, and other unique characteristics of your EDS or HSD, and to share your story! www.ehlers-danlos.com/breaking-down-barriers/representation-... #EhlersDanlosSyndrome #hypermobilityspectrumdisorders #ChronicIllness

Of the 9 poems I've written in the 2 1/2 weeks since I started moving into my new place, 4 are about pain and one about the depression associated with it. Not hard to see my current state of health...

a child in pain:
just growing pains
you'll grow out of it
oh come on, it's not THAT bad

a preteen in pain:
just trying to get out of PE
hormones on a rampage
you're overreacting

a teen in pain:
attention seeking
too young to be in THAT much pain
just stop thinking about it

a young woman in pain:
it's all in your head
your test are all ok
psychotherapy recommended

a mother in pain:
hmmm... arthritis already?
don't lift your kids
just lose some weight

an old lady in pain:
genetic, degenerative diagnosis
why wasn't this detected sooner
wow, you have a high pain tolerance

a lifetime in pain
screaming into the gaslight
validation sweet on my tongue
with a bitter aftertaste

- Remy Soberanes

#MightyPoets #ChronicPain #JointHypermobilitySyndrome #hypermobilityspectrumdisorders #EhlersDanlosSyndrome #Fibromyalgia #Arthritis #ChronicIlless

[Note: For as long as I can recall, my dream was to write novels but my illnesses impact my brain in a way that destroyed all my confidence as a writer. It broke my heart and I abandoned writing altogether... until I was watching Queer Eye (I swear that show is practically therapy) and one of the guys told the lady he was working with that when you hit a road block on the path to your dreams, don't give up; just pivot. I stepped off the road to my novelist dream and pivoted to find poetry. Now I'm back to writing daily, with hope restored and a sense of purpose and fulfillment.]

"Pivot"

When hardships intervene
and stomp on your dream
but you're still determined to live it...

pivot

Find an alternate way forward
Explore paths undiscovered
Be determined, be explicit...

and pivot

And if you once again
allow despair to sink in
don't be your own worst critic...

just pivot

- Remy Soberanes

...

#MightyPoets #NeurologicalDisorder #Dysautonomia #Fibromyaliga #InflammatoryArthritis #hypermobilityspectrumdisorders #BrainFog #MemoryLoss #Aphasia

.

"How are you?"

I'm hanging in there
Making the best of life
in a world that's not built for me
Figuring it out as I go
I'm alive and kicking
Never better (with a make believe smile)
Each polite reply a lie

- Remy Soberanes

...

An acrostic poem is one where the first letter of each line spells out a word or phrase.

...

#MightyPoets #ChronicIllness #InvisibleDisability #hypermobilityspectrumdisorders #Dysautonomia #InflammatoryArthritis #Disability

.

I had my first diagnosis of a medical disorder/chronic illness when I was in elementary school. The second hit me as a preteen and the 3rd my senior year of high school. Several more showed in my 20s and my 30s brought an avalanche of diagnoses. Many of them have symptoms which are vague (meaning they don't point to a specific diagnosis) and, at least initially, don't always show up on the plethora of tests doctors inevitably put me through.

From my own research, I could see why I received each diagnosis but also why doctors were confused since many of them don't fit completely. I spent a lot of time trying to find "the answer" to my body's riddle. After A LOT of research, I found a potential disease (ehlers danlos syndrome) which seemed to fit better than the others. However, my doctor didn't feel qualified to do the evaluation and the specialist I found stopped taking new patients when the pandemic hit, and then I moved and the search for new docs delayed things further. So a few weeks ago, I was finally able to get evaluated and while she doesn't feel that I have EDS, she diagnosed me with a very, very similar connective tissue disorder, Hypermobility Spectrum Disorder. HSD (formerly known as joint hypermobility syndrome) is so similar to the hypermobile type of EDS that the terms are often used interchangeably, even within the medical community.

I bought a book about HSD/hEDS last week ("Disjointed") and keep crying while reading the stories from various patients and medical professionals. Not crying from fear for my future; crying from relief. The relief of recognition and validation.

I've been crying in relief but also letting out all the frustration of decades of misdiagnosis and gaslighting. The frustration of knowing that I had to find my own diagnosis and the anger of the nearly 2 years of trying to get the evaluation done.

There's a saying among doctors: "When you hear hoofbeats, think horses not zebras." It's their version of Occam's Razor: the simplest diagnosis is most often the correct one. The EDS/HSD community call themselves zebras because, for us, having doctors always looking for horses keeps them from believing we're zebras even when they can see our stripes. Ignoring the possibility that we could be zebras leads to serious delays in diagnosis after the more serious issues present: an average of 4 years for men and 16 years for women (despite women being 3x more likely to have it... but the misogyny in the medical world is a subject for another time).

The doctor said that it doesn't really matter which diagnoses (autoimmune disorder, hEDS, or HSD) I'm given because none of them have a specific treatment regimen or cure; you just manage the symptoms. I understand what she meant but, personally, having the correct diagnosis has meant the world to me.

#Hypermobility #HEDS #JHS #HSD #hypermobilityspectrumdisorders #Misdiagnosis

I plan to read all 688 pages :)

#hypermobilityspectrumdisorders #HypermobilityEhlersDanlos #EhlersDanlosSyndrome #ChronicPain #bendybunch