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Ehlers-Danlos Syndrome

@eds__awareness

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Raising awareness for Ehlers-Danlos Syndrome and all the new research🤍🖤🤍

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Meet @alexandraelaineadams 💜

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@bendy_bodies , @drzacspiritos , or anyone else with hEDS and/or MCAS expertise, any tips 💡 on surviving vibration 🫨?!

If there’s no vibration, I can relax my muscles and sleep 🥱 safely, but if there is vibration-being near a main road🚗, a train 🚂 , an airport ✈️, etc- it isn’t safe for me to relax my muscles in sleep.

The problem is: in extreme temperatures, I can’t just sleep in the tent. 🏕️

🤦‍♀️I can’t be the only one.

@diveblast I live inside your blanket, with @lifeprousa red lights 🔦 on the side.

@nasa 🚀I want to thank you for discovering that red lights speed up healing.❤️‍🩹

If anyone discovers 🧫 a way to protect against vibration (@mit , @nasagoddard ,@usarmy ) please 🙏 pass it along to people with EDS and MCAS.

We live with joints 🦵 falling in and out of sockets. It’s excruciating 😣 and your discoveries could help us!!!

@ehlers.danlos @ehlersdanlosboy @ehlersdanlosresearch @ehlersdanlosuk @eds__awareness @cortdoesscience @tulaneu @mcas_connect @mastcellaction @mastcell360 @mastcellaware

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This dr then compared me to an 80 year old in vision therapy who wants to “see more crisp” and said “some patients are more glass half full than others” like bro, 1, I’m not 80, I have a whole life ahead of me that I want to live and experience. 2. I’ve had brain and spine surgery and 7 brain injuries so I’m pretty sure it’s just wildly different than just wanting to see more “crisp”. 3. if you met me for even 2 minutes you’d know I’m a very positive person going through a LOT medically. And #4. I’ve been told “you have the best attitude ever, you’re going to improve so fast” as structural abnormalities were ignored and I was left to wither away and die. So what is the patient supposed to do!? How is there room for us to both advocate for ourselves AND be respected!?

#chronicillnessawarness #ehlersdanlossyndrome #traumaticbraininjury #chiarimalformation

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Be honest… how many symptoms would you have to list before your doctor started looking for the exit? 😂💀

Living with Ehlers-Danlos syndrome (EDS), POTS, chronic pain, and chronic fatigue means that explaining your health can turn into a full-time job. When pain, dizziness, exhaustion, and a collection of other symptoms are part of everyday life, “How often does this happen?” is a surprisingly complicated question. 🫠

Welcome to the reality of invisible illness, where the symptoms are endless, the explanations are exhausting, and somehow we’re still expected to act normal. 😂

👇 Chronic illness warriors: what symptom would you put FIRST on your list? And for everyone else, what’s the longest list of complaints you’ve ever had? 😂

#ehlersdanlossyndrome #pots #chronicillness #chronicpain #chronicillnesshumor

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Hypermobility isn’t just about bendy joints. 🧬

Connective tissue is everywhere in your body, so when it’s extra stretchy, symptoms can show up far beyond your joints. Pain, gut issues, temperature swings, crushing fatigue.

And it often doesn’t travel alone. Meet “the trifecta”:

🦴 hEDS / HSD: loose, unstable joints, chronic pain, easy bruising
💓 POTS: a form of dysautonomia. Your heart races and you feel dizzy or wiped out when you stand, especially in the heat
🌸 MCAS: mast cells overreact, causing flushing, hives, itching, and reactions that look like allergies

Some doctors sum it up as “bendy, itchy, and dizzy.”Why do they cluster? Researchers are still working that out. The leading theory is that stretchy blood vessels let blood pool, which strains your nervous system. On top of that, MCAS and POTS can feed off each other.

How common is it? In one study of women with HSD/hEDS, more than half had POTS, about a third had MCAS, and 1 in 4 had all three.

If this sounds like you, look for a provider who knows connective tissue disorders. And keep moving: strength and stability training beats more stretching. 💪

Save this + send it to the friend who’s always “just flexible.” 🤍

Big thanks to all my healers @drlisette, @thefixwellnesslounge , @abramshouseofhealing , @dr.stephanieabrams , and @kellygelfound who can assist if you feel you need a diagnosis.

Educational only. Not medical advice or a diagnosis.
#hEDS #EhlersDanlos #POTS #mcas #dysautonomia

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“Can you explain what you mean by hypermobile?”

Me: “Absolutely.”

Also me: proceeds to demonstrate why my joints should probably have a supervisor. 😂

When your doctor asks you to explain your range of motion and you realize the only appropriate response is a live demonstration. 🫠

How would YOU explain hypermobility to someone who’s never seen it before? 😂👇

#hypermobility #eds #ehlersdanlossyndrome #chronicillness #rangeofmotion

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Smiling ☺️ through the pain.

I have a confession to make.

@Throughout the Pure Beauty Contest for Voguir Model of the Year @fashionrepublicmag, I have been nursing complications from an impacted tooth extraction that I had done a week ago.

Because I had this surgical procedure done while I was on my period, I find that I now have Anaemia, coupled with chronic fatigue, delayed wound healing ❤️‍🩹, back and leg pain. These are all complications associated with @ehlers.danlos syndrome, a rare disease that I was diagnosed with 10 years ago, when I was 28 years old.

As I wait for an opportunity to return to Europe to undertake genetic testing to confirm my diagnosis, I find distraction by applying for online beauty pageants such as Pure Beauty of the Year.

To each and everyone who has voted 🗳️ me to date, I am thankful 🥹 to you all.

I truly appreciate your support during this difficult time of healing ❤️‍🩹.

I pray for God to bless you with all the desires of your heart. ❤️

Please 🙏🏼 vote 🗳️ for me by clicking the link 🔗 in my bio
OR visiting this link 🔗 https://voguircover.com/c?code=jsjzf

I appreciate it. God bless you.

#edsawareness
#zebrastrong
@fashionrepublicmag
@ehlersdanlosuk

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❤️ Non tutte le battaglie del cuore si vedono.

Nella Giornata Mondiale del Cuore, ricordiamoci quanto sia importante ascoltare i segnali del nostro corpo e prenderci cura della nostra salute.

Per chi convive con condizioni croniche come la Sindrome di Ehlers-Danlos, conoscere il possibile coinvolgimento cardiovascolare significa avere più consapevolezza, non più paura. 🦓❤️

🌻 Ascolta il tuo cuore. Ascolta il tuo corpo.
ErikartEmozioni — Dare voce all’invisibile

⚠️ Disclaimer: questo contenuto ha esclusivamente finalità informative e di sensibilizzazione e non sostituisce il parere, la diagnosi o le indicazioni di un professionista sanitario. In presenza di sintomi o dubbi, rivolgiti al tuo medico.

#GiornataMondialeDelCuore #WorldHeartDay #EhlersDanlos #EDS #MalattieInvisibili #ErikartEmozioni

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Finally being diagnosed at 44 years old with hypermobility and hEDS explains soooooo much about my aches, pains, habits, and even personality 🙏

How are my hEDS sisters or any neuro-immune disorders sissies feeling ?

#EDS #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlossociety #ehlersdanlosawareness

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Now then the limited edition clobber is on the way!

Pip n Peeko x Be U Clothing with their first collaboration empowering EDS awareness.

PRE ORDER HERE https://beuclothing.co.uk/product/pip-n-peeko-x-eds-awareness/

Be quick because there will be only 40 in the first batch and we’re certain it’ll fly off the shelves.

Top quality gear produced by @oliksport with a premium knitted collar and sleeves giving you that retro feel that matches the classic Vinyl Anthems record selection.

£45. Supporting a good cause and continuing to raise awareness for EDS.

Stay tuned for more announcements for an official release date on the shelves and a big opening ceremony at @room78menswear

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