Did you know that since 1999 an independent group of global experts called the Strategic Advisory Group of Experts on Immunization (SAGE) has been providing WHO evidence-based recommendations on #vaccines?

If you receive Medicaid or any government assistance, make sure you contact your state congress members and plead with them to do what is right for the chronic illness community - visible illness or not! 🙏⚕️ "Able-Bodied" is an Ableist term 💯 Your State Republicans need to be educated. 📖

What suggestions do you have? 1) We think one of the most important: Make sure the person knows you ❤️ them and deeply care for them 2) Let them know they are wanted in this 🌎 3) (Let them know you will) Truly Listen - w out judgment or suggestions 👂 #MentalHealth #SuicidePrevention

The use of this drug combination can lead to severe sedation, respiratory depression, coma, and even death. These risks are significantly heightened when opioids are mixed with other depressants, such as benzodiazepines.

"Biomarker testing is transforming how rare cancers are diagnosed and treated, opening the door to more precise and personalized care. ... In honor of #RareCancer Day, experts and patient advocates broke down what biomarker testing is, why it matters, and how to overcome barriers to access." #Cancer

Super cool! If in New York + have EDS, definitely check Hyp+Care out next year! Mark your calendar. 🤗 🩵🦓🩵

When you are "unemployable" + are an EDS er living in Trump's USA = 🥺😖 It has cost my father $36k + CO pays for my healthcare + the hours my son spends caring for me... and we still have 3 months left in 2025 🗓 #ehlersdanlossyndrome #chronicillness You can help us 🩵🦓🩵 linktr.ee/thezebraalliance

Learn how you can be involved in transforming the WHA Resolution on Rare Diseases into concrete action for our communities in Asia Pacific. 🗓 9 October 2025 🕔 9:00 CEST (UTC+2) ✏️ Register here: events.teams.microsoft.com/event/7b6449...

Kind of love this! 😍😍😍 First Aid Kits on Hiking Trails is a great idea!

Access to safe abortion protects the health of women and girls. As with all other health services, women and girls should be able to access safe and respectful abortion care, when they need it, without fear of harm, punishment or recrimination. #HealthForAll

Dr. Titilope Fasipe shares what patients need to know about sickle cell disease. #SickleCellDisease #SickleCellDiseaseAwarenessMonth

Heartbreaking, but we need to know davisvanguard.org/2025/09/yout... #Neurodivergent #Neurodiversity #Neurodivergent #Neurospicy #Autism #ADHD #AuDHD #TouretteSyndrome #tourette #disorder #ocd #dyslexia #asd #Dyspraxia

🎗️ September is Childhood Cancer Awareness Month. Go gold to honor kids and families showing incredible bravery every day 💛 #ChildhoodCancerAwareness #GoGold

Do you have a kiddo who lives with autism + insomnia + is under a Dingley Consult + in the UK? ✅️ Take a look at the study below that is happening. DYK: There has been a link found between connective tissue and #neurodiversity. #neurodivergent #autism #UK #autismresearch #EDS #hEDS #HSD #insomnia

🙏 Don't be scared 🙏 "Yale School of Public Health Assoc Professor Dr. Zeyan Liew, PhD, MPH, has spent years investigating contributors to #NeurodevelopmentalDisorders. He says that there is no proven causal relationship between #acetaminophen use and autism." #Tylenol #pregnancy #healthcare #autism

Have you heard of USH? " #UsherSyndrome (USH) is a rare inherited condition - passing from parents to children - that impacts three major senses in the body: hearing, vision, and balance." #RareDiseases 🩵🦓🩵 #raredisease #chronicillness #healthcare #genetics

"Recognise ME: Memoir documenting the raw journey through medical gaslighting as a chronic illness patient" by Anneke Vliegen. I met Anneke online through an #EDS support group. Wonderful woman! Read it for free: a.co/8kPkB4A #bookrecommendations #chronicillness

"... found 35 blood proteins that were different in people with #hEDS ... Most of these changes were in proteins linked to the immune system, 🩸 clotting, blood pressure, and inflammation. The largest ... involved the complement system, which helps the body fight infection & control inflammation."

"Both GJH and extreme hypermobility are significant risk factors for long COVID. People with extreme #hypermobility, as newly defined in this study, are at particularly high risk of developing #LongCOVID after an initial #COVID -19 infection." #ehlersdanlossyndrome #hypermobilityspectrumdisorder

How is your day going? 📦😉 #meme #memes #mentalhealth #healthmeme #chronicillness

Venomous #SnakeBite 🐍 causes an estimated 80,000 to 140,000 deaths every year and over 240,000 victims of permanent disabilities. No one should have to die or suffer from disability due to venom poisoning bit.ly/Ssssnake

We have this conversation a lot as there are A LOT of folks who don't have a PC/GP: It's important for people w #ChronicIllness 💯👉 PC/GP track all: The bigger picture + do prevention, like shots & yearly check-ups, and if a good one, work w specialists as a team 😃 (etc) #EDS #raredisease #healthcare

We have an exciting new development with a twist! 🥨 For all the details see our article 👇 #longcovid #pwME #chronicillness open.substack.com/pub/longcovi...

September is Pain Awareness Month and we're not letting it go by unnoticed... www.chronicpainpartners.com/september-is... #EDS #hEDS #HSD #Hypermobility #Fibro #Pain #MedEd #MedSky #Zebras #NEISvoid #Spoonies #IIH #Migraine #Arthritis #POTS #MCAS #ChronicIllness #Disability

Worldwide, fungal diseases and antimicrobial-resistant fungi are increasing. In honor of Fungal Disease Awareness Week, learn about fungal diseases and raise awareness to help reduce the harmful effects of fungal diseases: https://bit.ly/4dyCy6u #FungalWeek25

Someone's post brought up a #MentalIllness that isn't addressed enough: #Cyclothymia People like to compare the BP disorders, but ea has its own struggles, and ea patient will have different experiences. DYK: Bipolar 3 is a #RareDisease + goes by a few names 🩵🦓🩵 #mentalhealth #chronicillness

"Turning our attention to an enjoyable activity can help distract us from our symptoms & pain, creating a feeling of ease + relaxation ... Leisure activities also help us long-term, providing structure, purpose, identity + hope." - Katie Willard Virant MSW, JD, LCSW, Psychology Today Article

Are you in Canada and need help finding a doc, services, or otherwise (medically)? Take a look at the #EDS Foundation of Canada: edscanada.org 🩵🦓🩵 #ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilityspectrumdisorder #hEDS #raredisease #chronicillness #chronicpain

Sad news yesterday here in Colorado: Another School Shooting 🥺 If you are in the area and need support, please take a look at the resources Denver7 shares below 🩵👇🩵 #schoolshooting #Colorado #evergreencolorado #mentalhealth

We all find different reasons for staying during incredibly hard chapters. For Genevieve, something getting her through an exceptionally trying year was her friend’s wedding. You can read “The Hope of a Quiet Mind” at https://twloha.com/blog/the-hope-of-a-quiet-mind/.

New #research suggests that in infants with #KlinefelterSyndrome, testosterone treatment improved linear growth and lean mass compared to the placebo, but it did not improve neurological outcomes. #endocrinology

Don't laugh: We are watching the Resident 😉 and Still's is one of the rare diseases a patient has been diagnosed with. 👌 They have actually talked about quite a few rare(er) diseases, including #cEDS 🩵🦓🩵 #stillsdisease #raredisease #rarediseases #chronicillness

Is PEM the same as fatigue? "No. Fatigue is a general feeling of exhaustion and can come in many forms. #PEM, however, is a more whole-body, prolonged, and often delayed phenomenon. It is distinct because it is more comprehensive and significant." #PostExertionalMalaise v #Fatigue (and #Exhaustion)

🫶😊🫶 #chronicillness #raredisease #disability #EDS #ehlersdanlossyndrome #ehlersdanlos #HSD #dynamicdisability #mentalhealth #healthmeme

We did not know this was a thing 😬🫢 Have you tried this? 👉 Take a look at the alternative suggestions from @clevelandclinic.bsky.social in their post thread. #mouthtaping #sleepapnea #snoring #health #healthcare

🤣😂🤣 We needed that laugh 😂🤣😂 #chronicillness #meme #chronicpain #memes #healthmeme #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability #health

Please share your experiences in the comments. Let's bring awareness to this topic. 🩵🦓🩵 #chronicpain #EDS #ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilityspectrumdisorder #HSD #hEDS #chronicillness

Every year, more than 727 000 lives are lost to suicide. Behind each number is a story cut short. We aimed for a 33% reduction in deaths by 2030, but progress is just 12%. This is a crisis. We must act with urgency, compassion & investment in #SuicidePrevention 👉 bit.ly/3Vr2mtR #MentalHealth

When men don’t exercise, they say it takes a toll on their health, confidence and sex drive. Yet one in three still skip it, according to our new survey. #MENtionIt Learn more: cle.clinic/3HV1kmO

If you live in an area with standing water: ✅Use mosquito repellent ✅ Wear long sleeves & trousers ✅ Sleep under bed nets Stay safe. Protect your health 👇

Floods can have a devastating impact on health from drowning, injuries to the risk of electrocution and even snake bites. Floods can: 🚱 Contaminate drinking water 🚽 Disrupt sanitation 🦟 Create mosquito breeding sites Stay alert. Stay safe.

Another Rare Connective Tissue Disorder, #RIN2 Syndrome aka #MACSsyndrome 🩵🦓🩵👉 rarediseases.info.nih.gov/diseases/171... #raredisease #chronicillness #disabilities

If you are interested in learning about different types of #RareDiseases, make sure to give @rarectadvocate.com a follow 🩵🦓🩵

“Ableist ideas & beliefs affect people w disabilities in all aspects of life, including employment, healthcare, education, housing, transportation, etc. These ideas & beliefs create systems that discriminate and oppress people w #disabilities.” - Theo W. Braddy ♿️ #chronicillness #dynamicdisabilities

EDSers, what has your experience w Local Anesthesia been? 🦷 Here: 😖😭😖😭😖 The last time I went to the dentist I couldn't brush my teeth for almost 2 weeks because the dentist thrashed my mouth so badly w the needle: My gums were absolutely torn up. You'd think they went through a cheese grader. 🤪😒🤪

If you have watched any of these, please share what you liked about them 😊 🩵🦓🩵 Looks like a pretty great list! We are definitely going to check these documentaries out! 👀 🎥 #EDS #ehlersdanlossyndrome #ehlersdanlos #hEDS #chronicillness

This is very interesting! Give this vid a watch: Dr Clair explains everything perfectly for us laymen 😉 Did you know Veins have Connective Tissue? Vein Walls: www.sciencedirect.com/topics/medic... #hEDS #EDS #ehlersdanlossyndrome #vascularconditions #venousinsufficiency #healthcare #chronicillness

Tetralogy of Fallot (TOF) is a rare congenital heart defect composed of four structural abnormalities that together reduce oxygen in the blood and lead to cyanosis. Learn more: www.heartfeltdreamsfoundation.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness

This 1000%!!! We also see/hear the below from people w our illness: "If I can live a better qlty of life, they can too. They need to do more and work harder." 😒😅 #chronicillness #raredisease #chronicpain #invisibleillness #EDS #ehlersdanlossyndrome #disability #dynamicdisability #health #ableism