Explaining MG symptom fluctuations to foster understanding and patience: https://bit.ly/4n58Rye #MyastheniaGravis

Edward was diagnosed with PLOD1-related kyphoscoliotic Ehlers-Danlos syndrome in 2019, and shares his experiences with kEDS and oesophageal achalasia. youtu.be/7_6nUn7z8Cs?...

Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other problems such as fatigue, headaches, GI problems, and autonomic dysfunction are often seen as part of #HSD. youtu.be/93u8edKfbMQ?...

Also "I cant take more" Can you relate? Its not only hard, it can be downright scary. Thats definitely not talked about. I've been struggling w this A LOT. linktr.ee/lueoutdoorsllc #mentalhealth #mentalillness #chronicillness #raredisease #chronicpain #invisibleillness #disability #dynamicdisability

No one should be denied health care because of who they are or who they love. #HealthForAll #Pride

NEWS: Oxford researchers hunt for hidden protein clues to prevent prostate cancer Read about @oxpop.bsky.social and @ndsurgicalsci.bsky.social new research programme.

Gotta love relatable posts and memes that give you a giggle 😉😅😄 @chronicillness.bsky.social linktr.ee/thezebraalliance #meme #memes #chronicillness #raredisease #invisibleillness #disability #dynamicdisability #EDS #POTS #dysautonomia

REALLY, REALLY wish it was easy to explain what its like living w #EDS + (co)morbid conditions. Words can not convey the constant pain—physical & mental; utter exhaustion, and flare-ups; constantly grieving things you can no longer do because of #EhlersDanlosSyndrome + the list goes on. #hEDS #HSD

Relatable 🤪😆 linktr.ee/thezebraalliance #memes #meme #chronicillness #EDS #ehlersdanlossyndrome #HDS #hEDS #rarediseases #healthmemes

For many people living with #EhlersDanlossyndromes (EDS) or #hypermobilityspectrumdisorders (HSD), diagnosis is only the start. The next challenge is navigating care, being heard, finding support, and accessing joined-up services. ⁠

Us women have to be careful as our warning signs for a heart attack can be much different than men, and then there is the below: #SpontaneousCoronaryArteryDissection 🫀♀️ #SCAD #rarediseases #hearthealth #heartattack #womenshealth

(Comorbid) Heat Intolerance: It isnt just feeling overwhelmingly hot. 1) Syncope 2) Nausea 3) Swelling 4) Headaches/Migraines 5) Weakness 6) Brain Fog 7) Breathlessness 8) Intense Fatigue 9) Tachycardia 10) Excessive Sweating or lack thereof linktr.ee/thezebraalliance #heatintolerance #dysautonomia

People who make rude comments will be blocked: there are descriptive words for folks who enjoy being cruel to people because they believe they are smarter, and those words are: - Sanctimonious - Condescending - Pedant(ry) - Narcissist None are positive human traits. 😒😞 linktr.ee/thezebraalliance

Relatable #ChronicIllness #Memes 🤪😅 linktr.ee/thezebraalliance #meme #healthmeme #chronicillnessmemes #jokes

We have a couple of community members who live with APS 🩵🦓🩵 Do you or someone you know live with APS? What is one thing you wish people knew about it? #antiphospholipidsyndrome #APS #raredisease #rarediseases #chronicillness

Acceptance isn't just about making someone feel welcome. It can shape whether a person feels connected, valued, and hopeful. LGBTQ+ youth living in accepting communities reported suicide attempt rates 3x lower than those living in unaccepting ones. Every person deserves to experience belonging.

Caring for someone with Angelman Syndrome requires ongoing support and understanding. Discover helpful tips for managing seizures and navigating medical visits. #epilepsyexplained #epilepsy 💜.

We had a lot of changes this month, and are now down to just me (Sam, the TZA founder): Team members had to start working more hrs that earn them money, because of how expensive everything is under Trump. I am considered "unemployable" due to my utter lack of reliability, so you are stuck with me 😉

If your support animal is not covered under ADA + you rent, make sure to reach out to find out if this change will hurt you. 🩵🦓🩵 #HUD is "just" aligning their rules with the #ADA rules, whether right or wrong, fair or unfair. Contact your #Congress members and tell them how you feel/what you think 💯

Normally we dont post politics, but The Dept of Health (RFK) is literally killing people (via actions and words) and making folks with chronic illnesses suffer more 👉 Protesting loudly is the main way we can let the USA Gov know that whats happening is NOT ok! 🗣🪧💪🩵🦓🩵 #chronicillness #rarediseases

There are 13 different types of #EhlersDanlossyndrome, each with distinct features and risks. In this video, medical geneticist Dr. Francomano clearly explains the key differences between #EDS types: youtu.be/w62qVQvznYM?...

This week's Research Roundup features recent studies on #myopathicEDS (mEDS) and #hypermobileEDS (hEDS). ⁠ ⁠ These studies explore #genetics, chronic pain, swallowing difficulties, and parenting perspectives in rare conditions. www.ehlers-danlos.com/research-rou...

@letstalk.mentalhealth

We are so behind on EDS & HSD Awareness Month: We are SO sorry!!! 🫣😞 We are going to get caught up on bsky posts ASAP: life just hasn't been super kind to the team this week, but 💪🦓🩵☺️ linktr.ee/thezebraalliance #EDS #HSD #ehlersdanlossyndrome #ehlersdanlos #hypermobilityspectrumdisorder #hEDS

What Advice Would You Give Someone Recently Diagnosed With a #Hypermobility Spectrum Disorder? TZA would have to say... Be Kind to Yourself. Be Patient With Yourself. Practice Self Care. Physical Therapy is very important. Don't Judge Yourself. 💙🦓💙 #HSD #hEDS #EDS #hypermobilityspectrumdisorder

What if #CysticFibrosis care started in the womb? #MaternalFetalMedicine #MedSky

Day 10 of #EDS & #HSD Awareness Month: A Question We Get Asked A LOT What is #EhlersDanlosSyndrome? Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders caused by genetic changes that affect collagen, resulting in weakened tissues. #hypermobilityspectrumdisorder

EDS & HSD Awareness Month 🩵🦓🩵 Day 9: What Are Your Appointment Essentials? 🦓 #EDS & #HSD Resources: @ehlersdanlos.bsky.social linktr.ee/thezebraalli... #ehlersdanlossyndrome #ehlersdanlos #hypermobilityspectrumdisorder #hEDS #raredisease #chronicillness

How is your #EDS & #HSD Awareness Month going? Things have been hectic for the TZA team, so we are playing catch-up. We would LOVE to see photos from your Light It Up Orange Monday and Walk & Roll Wednesday 📷 and hear what your answers are to the EDS & HSD Awareness Day Topics! #ehlersdanlossyndrome

If you know, you know 🌞🤧😉 Sorry we are behind on EDS & HSD Awareness month 😞 Things have been a tad hectic around here. We will catch up, though, promise! 🤗😎

In the morgue, infants lay in diapers & blankets, ID bracelets on tiny ankles. Pathologists found signs of damage one finds in adults who have suffered a stroke or have gone through radiation therapy. (Sum: Duaa Eldeib, ProPublica) #vitaminK #rfk #vaccination #infantdeaths linktr.ee/thezebraalliance

Spot Juvenile MG Signs Early: https://bit.ly/40lyWzL #JuvenileMG #MyastheniaGravis #RareDiseaseKids #MyastheniaGravisNews #Bionews

Anna Durbin, an expert in experimental vaccines, explains the results of recent clinical trials for a Lyme disease vaccine. Listen to the full episode 🎧 podcast.publichealth.jhu.edu/1045-whats-n...

🩵 DYK: 🦓 I was finally given correct diagnosis 3/2020: #EhlersDanlosSyndrome was one of those diagnosis— took almost 40 yrs, but better late than never 🤪 🦓 My 22 yo son also lives with #EDS 🦓 I am the founder of @thezebraalliance.bsky.social 🩵

Day 3 of #EDS #HSD Awareness Month: Something that may surprise you... 🤔 The founder of TZA keeps a vomit bag in her car + a pot beside her bed because she has chronic nausea, that sometimes results in spontaneous vomiting 🤪 @ehlersdanlos.bsky.social linktr.ee/thezebraalliance #EhlersDanlosSyndrome

Feeling a little overwhelmed by “Maycember”? Here are some mental health resources to help you and your loved ones navigate stressful times and big transitions. https://cmkc.link/4t5Ijj1

You are more than your illness: you are a warrior full of hope. 🛡 #ChronicIllness

How do you explain EDS or HSD to people? @ehlersdanlos.bsky.social is SUPER helpful for folks trying to explain EDS or HSD to loved ones. 🩵🦓🩵 linktr.ee/thezebraalli... #EDS #HSD #ehlersdanlossyndrome #ehlerdanlos #hypermobility #chronicillness #raredisease #chronicpain #invisibleillness

#EhlersDanlosSyndrome & #HSD Awareness: Day 1 – Introduce yourself + share one thing you wish people knew about your journey (to diagnosis). Day 2 – Then and Now: What has changed, for the better, since Dx? (Self) Growth? (Knowledge, Pain/Life Mgmt, Confidence, etc.) #EDS linktr.ee/thezebraalliance

#EhlersDanlosSyndrome & #HSD Awareness: Day 1 – Introduce yourself + share one thing you wish people knew about your journey (to diagnosis). Day 2 – Then and Now: What has changed, for the better, since Dx? (Self) Growth? (Knowledge, Pain/Life Mgmt, Confidence, etc.) #EDS linktr.ee/thezebraalliance

Ingredients are a very important topic for a ton of people living with #ChronicIllness 💯 It is hard enough to find products for adults, let alone #tweens and #teens 🙄 Evereden might be a good "clean" brand to try: they make products for all ages, but their focus is kids #skincare 💙🦓💙 amzn.to/4cZMpn2

Zebras, We hope you will join EDS & HSD Awareness Month with @ehlersdanlos.bsky.social and TZA 🩵🦓🩵 linktr.ee/thezebraalliance #EDS #HSD #ehlersdanlossyndrome #ehlersdanlos #hypermobilityspectrumdisorder #EDSawareness #raredisease #chronicillness #dynamicdisability #disability

“You’re treating people with what they need, where they are, when they need it, and how they need it.”

We will see who is "just fine" after we get our hands around their (aka docs) neck... 😒😅😉 linktr.ee/thezebraalliance #chronicillness #raredisease #invisibleillness #disability #dynamicdisability #mentalhealth #healthmeme #EDS #ehlersdanlossyndrome #hEDS #HSD

We just took a gander: We think you'll definitely want to give it a read too 😃👍 Don't worry, it's not long 😉 🩵🦓🩵 linktr.ee/thezebraalliance #EDS #hEDS #HSD #ehlersdanlossyndrome #vEDS #cEDS #raredisease #chronicillness #EDSnews

Hello! Newly diagnosed with a #RASopathy syndrome? (#Noonan, #Costello, #Cardiofaciocutaneous #CFCsyndrome, #Neurofibromatosis 1, #Legius, and others) ⬇️ Here's a helpful whiteboard video to explain more youtu.be/-ZbyIWLVTds?...

In CID, authors evaluated the risk of de novo cancer in a large series of liver transplant recipients with HIV infection and in their HIV-negative controls followed for a long period of time. https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciag124/8654685

We just took a gander: We think you'll definitely want to give it a read too 😃👍 Don't worry, it's not long 😉 🩵🦓🩵 linktr.ee/thezebraalliance #EDS #hEDS #HSD #ehlersdanlossyndrome #vEDS #cEDS #raredisease #chronicillness #EDSnews

😳😧😟 If you take Omega Supplements (and have [had] frequent head trauma), have a chat with your doctor: It is worth a discussion. 🐟 💊 #fishoil #supplements #vitamins #omegas #omega3 #TBI #braininjury #mentalhealth #neurology #chronicillness #raredisease #EDS #chronicpain #invisibleillness #disability

Catch a special EDS Awareness Month online screening of the film COMPLICATED including post-show discussion with families from the film Sat May 2nd 2-4pm EST just $3 USD: www.eventbrite.com/e/join-our-s... #EDS #hEDS #HSD #FII #MedicalKidnap #Doctors #MedX #MedSky #Zebras #NEISvoid #Film