#ehlers-danlos syndrome awareness month

[thoradvice]

HELP A DISABLED YOUNG PERSON GET A SERVICE DOG DURING DISABILITY PRIDE MONTH

If anybody can donate, the link is here

Hi, my name is Evan, I'm a 20yr old lesbian and I have Ehlers-Danlos Syndrome, a rare connective tissue disorder that is slowly taking my mobility. I am desperately seeking funds to purchase a fully-trained service dog, which run the cost of £9,000-15,000. I am student, too disabled to work and reliant on my small disability benefit, and simply cannot afford this. I have £5,000 in savings I can put towards, but I am asking for support to cover the rest.

This dog would be life-changing for me, as a mobility service animal can provide balance and stability when walking, meaning I can be more physically active and preserve my mobility. They can also help me with chores around the house, remind me of medication, and alert someone in an emergency; all of this would mean that I could finally have the independence to move out of my parents' house, something that has always been out of reach for me, due to my inability to take care of myself and household tasks, as well as fear of what may occur in an emergency

I know times are tough for everyone, but I would be forever grateful to anybody who could spare a little, or even share this <3

[chronicallydragons]

could someone pretty please explain to my autonomic nervous system that we are not actually under attack or being chased by tigers when we...*checks notes*...are sitting up?

[basilstars0-o]

yk I think for ehlers danlos awareness month I should be allowed to be less aware especially of my dislocations

[rqmax]

I made some Hypermobile Ehlers-Danlos Syndrome Flags ^^

CishEDS:

TranshEDS:

TrishEDS:

Ehlers-Danlos Syndrome:

A connective tissue disorder. Symptom can include: disconnected joint, joint pain, stretchy skin, fatigue, easy bruising and more

Hypermobile Ehlers-Danlos Syndrome:

Ehlers-Danlos Syndrome with Hypermobility

[after-nine-at-the-oasis]

i've been sooo busy but!!! happy ehlers-danlos syndrome awareness month!!!

Ehlers-Danlos Syndrome is a connective tissue disorder characterized by fragile stretchy skin, loose joints, easy bruising, and more.

In me it represents as soft skin (literally get comments on it all the time), easy bruising, painful and hypermobile joints, easy joint subluxations and dislocations, nausea, and chronic pain. It also trigger Amplified Pain Syndrome, which I'll talk about another time but basically makes everything 10x worse lol.

Consider researching or raising awareness for Ehlers-Danlos Syndrome this month :). It can be a truly debilitating condition and is extremely underdiagnosed - though it's classified as a rare condition, it's expected that EDS could actually affect up to 1 in 500 people. There is no cure for EDS and the only treatment is physical therapy, along with treating the individual symptoms.

happy EDS month to all my fellow EDS peeps!!! love you all, we shouldn't have to be this strong but we are and we're awesome for that 😎

[that-disabled-princess]

Made another zine while stuck at home, but I like it so much that I think I'm going to make copies to give out to people! I'm thinking of taking a bunch of copies to pride next month :D

[ID: Two photos of a zine spread out. The zine is written in purple pen. In order, the pages read:

Cover page: Ehlers Danlos syndrome.

Page 1: What is EDS? EDS is a group of 13 genetic connective tissue disorders. Most, if not all, subtypes are rare diseases. Hypermobile, classical, vascular, myopathic, periodontal EDS + more.

Page 2: EDS can cause many problems, including chronic migraines and heart problems. It can affect everything from friendships, to hobbies, to your diet.

Page 3: Symptoms. Hypermobile joints. Fragile, stretchy, translucent skin. Digestive issues. Dislocations. Chronic pain.

Page 4: Fast facts. 80% of people with EDS also have POTS. EDS is commonly misdiagnosed. EDS is a dynamic disability.

Page 5: Why the zebra? "When you hear hoofbeats, think horses, not zebras." Doctors are taught this phrase, meaning many rare diseases are missed.

Page 6: Sometimes, when you hear hoofbeats, it really is a zebra!

Back cover: Share to raise awareness!

On the cover page is a zebra patterned awareness ribbon. On page four are drawings of a cane, a forearm crutch, and a wheelchair. /end ID]

[pennylunfersqueak]

I CAN’T ENJOY ACTIVITIES BECAUSE DOING THINGS HURTS AND I CAN’T REST BECAUSE LYING IN BED HURTS TOO

fcuk

[micah-has-fallen]

October is Dysautonomia Awareness month and Vitassium has a 31 day challenge. And I want to participate but lack consistency so I’ll prob do them in clumps. Anyways here’s a screenshot of the list :)

See y’all in a few days!

(I’m probably doing Inktober too but that won’t be posted here lol, it’ll be the month of consistency challenges)

[dimancheetoile]

hey guys, it's Ehlers-Danlos Syndrome Awareness Month

I've been living with this disease my entire life, it took me ten years after my initial questions to finally get diagnosed, only to find out I had a rare genetic disease with no cure, no treatment, a degenerative tendency that makes it harder to deal with every single day as your body gives out on you.

Please share this around and consider donating to fund research. The Ehlers-Danlos Society is a trusted entity that does almost monthly conferences and talks to explain in excruciating detail how EDS affects every aspect of your life from your heart function to your ability to work or even your risks during pregnancy and labour and how you're almost guaranteed to pass on this fucking curse to any child you suffer through birthing.

The EDS Society is super transparent about all the research they do and how your donations help, because it sure as fuck isn't gov funded research that cares about finding a solution for us. After all, it's a rare disease so if they find a cure, it won't make them a lot of money to give it to the couple thousands to dozens of thousands of us that live in every country.

For the entire month, I'll be doing simple portrait commissions to donate money to the research done by the EDS Society. If you want something in exchange for your donation, then either DM me or send me an email at amako.sama.ff@gmail.com and provide references for your OC or fanart you'd like a portrait of. Check out my art tag to see my style or my pinned post for my commission info where there are examples as well.

If you also suffer from EDS, you can use May to tell your story, raise awareness, fundraise (you can even get a t-shirt from EDS Society if you raise $60 or more) and in general, help people know more about this, help families better care for their EDS loved ones, and be a positive impact on this community. Use the #MyEDSChallenge or #MyHSDChallenge (depending on your diagnosis) on Twitter, Instagram, Facebook or Tiktok and the Society will reblog your stuff. There are also 31 prompts for you to post about, which you can find on the website. If you want to hear a little about my own story, I have an ehlers-danlos syndrome, disability, disability awareness and EDS hashtags on my blog for you to go through.

Again, reblogs are very much encouraged and appreciated. Please help raise awareness for this burden we have to live with, knowing our own community has to do its scientific research because no one cares about us.

[decayingxdaisyx]

my many faces and I 🎭

[samuel-star]

Happy EDS and HSD awareness month! This month, I’ll be celebrating by getting about a million more symptoms and having a flare up on day one!

As a matter of fact, I wasn’t aware enough so my body decided to bring back symptoms that my doctors and physical therapist already helped out with!

Ow

Ow

Ow

Ow

Ow

(That’s me walking.)

[zebrapotsie]

It’s EDS awareness month once again and the reality is awareness is not enough.

For those that don’t know EDS is a connective disorder that causes a wide array of symptoms from joint dislocations to chronic nausea and so much more. There are 13 identified subtypes, all but one having an identified gene and some being ultra rare.

EDS has been overlooked, mistreated and misunderstood for far too long.

Patients seeking care and understanding are often met with disbelief from the very people who are supposed to be helping us. We as patients with EDS are denied our own experience by our healthcare providers, the very people who are supposed to help us.

Women’s pain is all too often dismissed and ignored. A study found that women who are in the emergency room with acute abdominal pain wait on average 65 minutes before receiving analgesic (painkiller), while their male counterparts receive analgesic wait on average 49 minutes.

I look back at my childhood and all the signs were there, they were just simply dismissed and ignored by the people who were supposed to be helping me. look back at my childhood and all the signs are there.

Women are disproportionately affected by EDS. My story however is not unique, both anecdotal evidence and peer reviewed research supports this.

Women are more likely to be dismissed and overlooked when it comes to chronic pain and other health issues.

This is a cultural issue that we must continue to fight for ourselves and those to come, as demonstrated above both my peer reviewed research and personal narrative. These issues are ever present in our society and women’s pain is taken less seriously whether it comes to emergency care or by a primary care physician.

But there is so much hope for the future. All of us zebras who are fighting for more awareness. Hopefully in the future it won’t take us on average 20 years to be diagnosed. 🦓

[whattheell]

Happy Celiac Disease/Ehlers-Danlos Syndrome awareness month to any of y'all who celebrate (and other awareness months too!)

I have no idea if anyone would be interested at all, but I will crappily edit an awareness ribbon of your choice (like below) to any pfp if anyone would like one

[rat-in-the-window]

October is Dysautonomia Awareness Month and I'm catching up on the prompt challenge.

Day 1: type of dysautonomia you have

_ I have POTS (postural orthostatic Tachycardia syndrome)

Day 2 and 3: diagnosis story and how long it took to get diagnosed.

I technically diagnosed myself, I've been having symptoms for over ten years (more than half of my life) and I've finally started researching it - finally when I was in nursing school I learnt about POTS and brought it up with my GP. Finally after three years, actively searching for a diagnosis I found a doctor who took me seriously and diagnosed me.

[thebeesbox]

Day 47 of Pride Flags Drawn as Foxes: Ehlers Danlos Syndrome

[lost-spoons]

May is EDS Awareness month

Don't be afraid to use what help.

Be unapologetically you, and if others don't like it then it sucks to be them.

(Above is an image of Op wearing blue jeans and knee braces, sitting down next to their smart crutches, a type of forearm crutches, that have decorative fairy mushrooms on them)