Ehlers-Danlos Daily
@ehlersdanlosdaily.bsky.social
Hi, I'm Lauren. I'm a US-based artist (LaurenRubinArt.com; thank you for your support!) and a zebra (EDS, POTS, epilepsy, MCAS...should I go on?). This account is specifically for those who want to keep abreast of news and information of interest to EDS.
We're on pause for a bit, fellow zebras. Thank you for your patience and support! :)
January 8, 2024 at 11:48 PM
We're on pause for a bit, fellow zebras. Thank you for your patience and support! :)
"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...
www.abc.net.au/everyday/kha...
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.
www.abc.net.au
December 20, 2023 at 6:08 PM
"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...
www.abc.net.au/everyday/kha...
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...
thevinylfactory.com/features/bef...
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.
thevinylfactory.com
December 19, 2023 at 3:36 PM
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...
thevinylfactory.com/features/bef...
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...
www.bishopsstortfordindependent.co.uk/lifestyle/bi...
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.
www.bishopsstortfordindependent.co.uk
December 17, 2023 at 10:16 PM
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...
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/...
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/...
Sage Journals: Your gateway to world-class journal research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
journals.sagepub.com
December 16, 2023 at 8:52 PM
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/...
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/...
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...
Having children isn't for me. But how do you feel about the whole kid sitch?
nebraskapublicmedia.org/en/news/news...
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...
nebraskapublicmedia.org
December 15, 2023 at 10:27 PM
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...
Having children isn't for me. But how do you feel about the whole kid sitch?
nebraskapublicmedia.org/en/news/news...
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...
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...
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.
ehlersdanlosnews.com
December 14, 2023 at 5:43 PM
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...
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...
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...
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...
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...
www.ucdavis.edu
December 13, 2023 at 11:49 PM
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...
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...
www.digitaljournal.com/pr/news/getn...
Unveiling the Resilient Journey of a Body: “The Body Nobody Believed” by Isobel Knight
www.digitaljournal.com
December 12, 2023 at 8:23 PM
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...
www.digitaljournal.com/pr/news/getn...
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...
My question, however, is what doesn't carry more risk for people with EDS? ::shrugs::
www.sciencedirect.com/science/arti...
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…
www.sciencedirect.com
December 10, 2023 at 9:56 PM
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...
My question, however, is what doesn't carry more risk for people with EDS? ::shrugs::
www.sciencedirect.com/science/arti...
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...
www.nzherald.co.nz/nz/nz-teenag...
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.
www.nzherald.co.nz
December 9, 2023 at 9:12 PM
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...
www.nzherald.co.nz/nz/nz-teenag...
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...
We need more compassion. We need to repair the world.
www.nzherald.co.nz/hawkes-bay-t...
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.
www.nzherald.co.nz
December 8, 2023 at 10:53 PM
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...
We need more compassion. We need to repair the world.
www.nzherald.co.nz/hawkes-bay-t...
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...
community.scoop.co.nz/2023/12/ehle...
Community Scoop » Ehlers-Danlos Syndromes New Zealand
community.scoop.co.nz
December 7, 2023 at 12:55 AM
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...
community.scoop.co.nz/2023/12/ehle...
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...
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...
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.
www.odt.co.nz
December 5, 2023 at 4:14 PM
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...
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...
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...
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...
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 ...
www.givesendgo.com
December 1, 2023 at 7:10 PM
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...
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...
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...
"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...
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.
www.abc.net.au
November 30, 2023 at 5:52 PM
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...
"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...
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...
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...
Family remember ‘treasured daughter’ as young woman dies of rare condition
Georgie Ferris loses battle with disorder that can lead to gastrointestinal problems.
www.nzherald.co.nz
November 30, 2023 at 3:52 PM
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...
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...
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/...
She fainted just before she was to speak. And she still persevered!
Can I be her?
www.lutontoday.co.uk/news/people/...
Dunstable woman collapses outside Downing Street while campaigning for treatment for ‘invisible il...
She was raising awareness of Ehlers-Danlos Syndrome
www.lutontoday.co.uk
November 29, 2023 at 4:49 PM
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/...
She fainted just before she was to speak. And she still persevered!
Can I be her?
www.lutontoday.co.uk/news/people/...
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...
www.mdpi.com/2075-4418/13...
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...
www.mdpi.com
November 29, 2023 at 2:30 PM
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...
www.mdpi.com/2075-4418/13...
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 know I can get anxious AF. How about you? And holistic care does help me with that.
www.psychologytoday.com/us/blog/phil...
A New Pathway Between Body and Mind?
Connective tissue disorders are physical conditions with psychological aspects.
www.psychologytoday.com
November 28, 2023 at 5:28 PM
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 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...
“Aphex Twin meets Dove Real Beauty." That kinda sounds like our love story, doesn't it?
marcommnews.com/the-invisibl...
The invisible suffering of Ehlers-Danlos patients visualised in new campaign by WMH&I – Marketing ...
marcommnews.com
November 27, 2023 at 2:34 AM
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...
“Aphex Twin meets Dove Real Beauty." That kinda sounds like our love story, doesn't it?
marcommnews.com/the-invisibl...
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...
Do you have six figures in your bank account? I don't.
www.gofundme.com/f/life-savin...
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
www.gofundme.com
November 24, 2023 at 5:35 PM
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...
Do you have six figures in your bank account? I don't.
www.gofundme.com/f/life-savin...
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...
easterndoor.com/2023/11/21/a...
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...
easterndoor.com
November 22, 2023 at 9:20 PM
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...
easterndoor.com/2023/11/21/a...