Ehlers-Danlos Daily

We're on pause for a bit, fellow zebras. Thank you for your patience and support! :)

I'm out of the disability closet. The only limitations are the ones society places in my way - ABC E... For advocate and model Khadija Gbla, embracing the word disabled has been an empowering act.

"I'm out of the disability closet. My mum put me in there. Society put me there. And at the age of 35, I'm saying no, disabled people deserve to be seen. We belong everywhere, we have a lot to offer the world. We're not people's trauma porn, we're not inspiration."

www.abc.net.au/everyday/kha...

Before The Needle: Making vinyl with a cause - The Vinyl Factory How The Vinyl Factory pressing plant created a snowflake splatter vinyl Christmas charity single for TEM-PLE.

Vinyl, Christmas music, and a badass with EDS raising awareness about this minor little problem (/s) we have. What's not to love!

thevinylfactory.com/features/bef...

Growth on the cards for Katie’s cause delivering cheer to children in hospital Cards for Bravery, which Katie Callaghan set up at 13, sent 5,000 hand-made cards to children enduring long stays in UK hospitals this year.

I love what our zebra sister Katie Callaghan is doing; it's so wholesome! She founded a charity called Cards for Bravery that shares handmade cards with children who have long hospital stays. Wonderful! :)

www.bishopsstortfordindependent.co.uk/lifestyle/bi...

Fascinating! Researchers asked pediatric physicians what they needed to better support EDS patients.

Truth be told, it's easy to crap on doctors who miss the mark. But, like many other issues in the medical field, it's a systemic problem first and foremost.

journals.sagepub.com/doi/10.1177/...

After Dobbs, doctors say more people are turning to permanent contraception Dr. Clodagh Mullen, an obstetrician-gynecologist at MetroHealth Medical Center in Cleveland, said since the Dobbs v. Jackson decision — which took away the constitutional right to abortion and retur...

Grace O'Malley is a 30-year-old American who has EDS. After Dobbs, she underwent sterilization b/c of legitimate fears about being able to obtain an abortion in the current climate.

Having children isn't for me. But how do you feel about the whole kid sitch?

nebraskapublicmedia.org/en/news/news...

Mutation in MIA3 gene a likely cause of hEDS, study suggests |... A mutation in the MIA3 gene that's linked to collagen secretion may be a likely cause of hypermobile Ehlers-Danlos syndrome, a study found.

These findings may be from earlier in the year, but this is still way too important to not post.

Apparently a mutation in the MIA3 gene causes the development of hEDS.

We can have a really fascinating conversation about gene therapy...some other time.

ehlersdanlosnews.com/news/mutatio...

UC Davis Graduating Student Poised to Help Those With Rare Condition Editor’s note: To be admitted to the facility to cover commencement, please contact Julia Ann Easley, below. “When you hear hoofbeats, think horses, not zebras.” In medicine, this maxim recommen...

Jeevan Mann is one cool dude! He's, get this, a 20-year-old with EDS who is also interning with researchers to develop therapeutics for EDS.

And, as if that wasn't badass enough, he's also started a nonprofit called Medical Inspiration to advocate for zebras. Wow!

www.ucdavis.edu/news/uc-davi...

Isobel Knight's "The Body Nobody Believed" is a personal memoir focused on her EDS. I haven't read it, but I look forward to doing so! This might just be the perfect gift for a loved one who just doesn't seem to get the awful challenge that is living with EDS.

www.digitaljournal.com/pr/news/getn...

Ehlers-Danlos Syndrome is Associated with Increased Rates of Adjacent Segment Disease Following TLIF... Ehlers-Danlos syndrome (EDS) is a collection of connective tissue disorders which are often associated with tissue laxity and disc degeneration. Howev…

This study found that spinal fusion carries more risk for people with EDS.

My question, however, is what doesn't carry more risk for people with EDS? ::shrugs::

www.sciencedirect.com/science/arti...

Refused treatment: Kiwi teen accused of faking bowel illness Trinity, who's now 18, has been in and out of hospital since she was 2 years old.

These posts are a bit redundant. But so is life with EDS. What are we going to do, zebras? It's so rare that anyone in the medical establishment actually believes us. Do we all have to die? Will they even believe us then?

www.nzherald.co.nz/nz/nz-teenag...

Cancer killed her father and drained her family's bank accounts - now she needs $180k to fight her d... Caitlin Umbers lost her dad last year - now she needs urgent surgery in Germany.

It sucks that we live in a world where healthcare, which should be a human right, is often overpriced beyond any reasonable person's ability to pay for it (including in countries w/ universal healthcare! WTF?)

We need more compassion. We need to repair the world.

www.nzherald.co.nz/hawkes-bay-t...

Community Scoop » Ehlers-Danlos Syndromes New Zealand

Bingo: "The issue becomes when we have medical professionals unwilling to learn and research, and also lack of awareness and education for medical disorders, leading medical professionals to label consumers with mental disorder[s]."

community.scoop.co.nz/2023/12/ehle...

Three women with Ehlers-Danlos die in three months Three NZ women - including a Christchurch academic and mum of two - with Ehlers-Danlos Syndrome have died within three months.

Rest in peace, Dr. Rachel Palmer, Georgie Ferris, and Stephanie Aston.

EDS is bad enough. But being told we're just making this all up could actually be even worse, at least psychologically.

We're not making Ehlers-Danlos syndrome up. :(

www.odt.co.nz/star-news/st...

Failures in care led to Sussex woman's suicide, jury says Jessie Eastland-Seares took her own life while detained under the Mental Health Act in East Sussex.

Smart jury. Shitty NHS.

www.bbc.com/news/uk-engl...

Click here to Give now to Help for Sierra Larson by Jenna Preston Please help my friend Sierra! She is a victim of domestic violence, which she escaped only a few months ago. She still deals with severe injuries from the abuse she suffered. Sierra is also burdened ...

You know the drill: This is another opportunity to support one of our own.

Sierra Larson has faced domestic violence & a stroke. Oh, you know, in addition to her EDS, POTS, MCAS, and more.

Give if you can to help with her expenses. We're all in this together.

www.givesendgo.com/pleasehelpsi...

Join daine on a day in their life living with POTS and EDS - triple j daine took us through their daily routines as a creative living with Ehlers-Danlos syndrome (EDS), Postural orthostatic tachycardia syndrome (POTS) and autism.

As a disabled artist (laurenrubinart dot com---thanks for your support!) w/ EDS & POTS myself, I cosign daine's words:

"Being a disabled artist is not glamorous, but it's not a tragedy."

Get in touch if yr an artist w/ EDS. Mutual aid. Let's be our biggest fans.

www.abc.net.au/triplej/news...

Family remember ‘treasured daughter’ as young woman dies of rare condition Georgie Ferris loses battle with disorder that can lead to gastrointestinal problems.

Rest in peace, Georgie.

And a big "fuck you" to all who leveled bad faith accusations at her, believing that she was faking her EDS.

Who would fake EDS?

How about believing patients when they tell you what's wrong with them? This shouldn't be hard.

www.nzherald.co.nz/nz/ehlers-da...

Dunstable woman collapses outside Downing Street while campaigning for treatment for ‘invisible il... She was raising awareness of Ehlers-Danlos Syndrome

Alex Akitisi is a total badass. She presented Parliament with 30,000+ signatures on a petition to review how the NHS provides care for people with EDS and other HSDs.

She fainted just before she was to speak. And she still persevered!

Can I be her?

www.lutontoday.co.uk/news/people/...

Coexistence of Ehlers–Danlos Syndrome with Coronary–Pulmonary Arterial Fistula and Other Multipl... This case report presents a 34-year-old male with Ehlers–Danlos syndrome, type 2 diabetes mellitus, aortic valve regurgitation, and aortic bulb aneurysm. Following spine surgery for thoracic–lumba...

NEW CASE REPORT: EDS may be relatively rare, depending on your definitions of "relatively" and "rare." But EDS coexisting with multiple coronary artery anomalies is even rarer. Read on for a medical profile of someone with both.

www.mdpi.com/2075-4418/13...

A New Pathway Between Body and Mind? Connective tissue disorders are physical conditions with psychological aspects.

Maier proposes that there may be a link between Ehlers-Danlos syndrome (and other hereditary connective tissue disorders) & mental health diagnoses, such as for anxiety.

I know I can get anxious AF. How about you? And holistic care does help me with that.

www.psychologytoday.com/us/blog/phil...

I like this ad campaign so much that I showed it to my non-zebra husband. He begged me to let him write this post, so here goes nothing:

“Aphex Twin meets Dove Real Beauty." That kinda sounds like our love story, doesn't it?

marcommnews.com/the-invisibl...

Congrats, Jeffie!

www.thewestonmercury.co.uk/news/2394140...

Life Saving Surgery for Melody, organized by Jack Wakelin I’d like to introduce you to my wife, the mother to our two wonderful boys, and the love … Jack Wakelin needs your support for Life Saving Surgery for Melody

I truly believe a better world than this is possible, a world where we don't need to advocate for ourselves or our loved ones on GoFundMe to fund the healthcare we need because our treatments cost six figures.

Do you have six figures in your bank account? I don't.

www.gofundme.com/f/life-savin...

Albert Stalk still a living legend Albert Stalk wants to set the record straight. He’s not dead, despite what some content farms online are reporting. The renowned ironworker recently got wind of the fake news after his son reached o...

Some good news: explorer Albert Stalk is...wait for it...not dead! It seems that content farms spread untrue news about Mr. Stalk, claiming that he had EDS and passed away from complications. My apologies for the mistake, but glad to find out about it!

easterndoor.com/2023/11/21/a...

Sussex woman's hospital death preventable, inquest told Jessie Eastland Seares died while she was detained under the Mental Health Act in Sussex.

The healthcare system—in the UK & the whole world—doesn't "get" people w/ EDS or any severe condition. That's why people like Jessie Eastland Seares die while under their "care." It could be me or you tomorrow. We have to keep advocating for ourselves. Silence is death.

www.bbc.com/news/uk-engl...

I’m frustrated by comments that suggest pain only comes with age As someone with Ehlers-Danlos syndrome, columnist Karen Del Vecchio is tired of hearing that she's not "old enough" to understand pain.

Unfortunately, I'm sure everyone with EDS has experienced this at some point:

"I know people don’t intend these comments to be hurtful, but sometimes I want to reply, 'Do you know how lucky you are that you didn’t experience regular pain until you were older?'"

ehlersdanlosnews.com/columns/im-f...

Ruby's Journey (medical care), organized by Elaine Morrissey Hi, this is Ruby, she is 5 years old and has no medical care in Ireland.  Every hospit… Elaine Morrissey needs your support for Ruby's Journey (medical care)

I'll always post appeals for EDS healthcare assistance. It's a shame that we can't all donate to everyone who needs help with their healthcare. It's an even bigger shame that healthcare is so difficult for us to obtain, not even counting the financial element...

www.gofundme.com/f/8b87y-ruby...

Same. Not for decades at least!

Foot Pain and Disability in Women with Rheumatoid Arthritis, Ehlers–Danlos Syndrome and Systemic L... The aim of this work was to investigate the relationship foot pain and foot disability have with HRQoL in groups of women with RA, SLE and EDS, in comparison with a control group. A cross-sectional st...

This study compares foot pain in women with EDS, rheumatoid arthritis, and systemic lupus erythematosus. They found that "the percentage of women with forefoot pain was not different between the disease groups," but "rearfoot pain was more frequent in EDS patients."

www.mdpi.com/2077-0383/12...