Chronic Gastrointestinal Problems are Painful & Frustrating + they can be Debilitating: its more than just an upset stomach 😖👉 Learn about GI disorders: iffgd.org #chronicillness #chronicpain #invisibleillness #raredisease #gastrointestinaldisorders #foodallergies #foodintolerance #meme #healthmeme

#GivingTuesday The organization we are hoping you will donate to is the @ehlersdanlos.bsky.social 🩵🦓🩵👉 www.ehlers-danlos.com/donate/ Others we hope you will support: - Breckenridge Outdoor Education Center in Summit Co, CO - Mountain Pride in Eagle Co, CO - Victims Advocates in Summit Co, CO 🫶🫶🫶

Life with Chronic Illness: We are over ripe 20 years before our time 🍌🤪😉 🖼 @chronicillness.bsky.social #meme #memes #healthmeme #chronicillness #raredisease #EDS #hEDS #HSD #invisibleillness #disability

Did you know there are over 200 types of Connective Tissue Disorder/Disease? 😮 They break down into three categories: Autoimmune, Genetic, and Cancer. 🩵🦓🩵 @clevelandclinic.bsky.social #connectivetissue #chronicillness #raredisease #chronicpain #invisibleillness #ehlersdanlossyndrome #EDS #HSD

We are pretty stoked we can easily share products we use and recommend with all of you: Linktr.ee/thezebraalliance 🩵🦓🩵 #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability #mentalhealth

Do you live with a #RareDisease and struggling to find care? NORD may have a facility near you 🩵🦓🩵 #Healthcare #Doctors #rarediseases #EDS

In patients with indolent #SystemicMastocytosis (SM), treatment with #Avapritinib has been associated with statistically significant, clinically meaningful improvements in dermatologic manifestations of the disorder. Findings from the #PIONEER trial (#NCT03731260) Learn more: https://bit.ly/4iqRVS0

Do you or someone you know live with #OrthorexiaNervosa? What would you like people to know about #Orthorexia and the mental & physical struggles that accompany this mental disorder? ⚕️ A NIH study found 3 / 10 study participants had ON symptoms. Its more common in athletes/fitness participants.

Patients with #Myelofibrosis (MF) are at substantially higher risk for pulmonary complications, especially bronchiolitis obliterans syndrome (#BOS), after hematopoietic cell transplantation (#HCT). Study in @astct.bsky.social#Myelofibrosis#BOS#HCTRead more: https://bit.ly/48hbqr8 #RareDisease #MF #Pulmonology

What are the #EhlersDanlosSyndromes and what is #HypermobilitySpectrumDisorder? Is one worse than the other? The simple answer is yes because symptoms of (h) #EDS are (typically) more severe, BUT that does not discount the impact #HSD has on quality of life, or lack thereof. 🩵 We see you HSDers 🤗

Does taking a shower make you sick? If you answer no, youre not allowed to comment on someone who hasnt showered in over a week because showering is (e.g.) painful, triggers symptoms, and/or takes you out for a day. Sincerely, Folks with #ChronicIllness 🩵 🖼 @thethrivingspoonie.com #ChronicIllnesses

Woke up with severe nausea 🤢 Mum was a Rn: Table Crackers were a go-to nausea food ☺️ "Youre Gluten Intolerant" Took a bit, but we finally found & enjoyed Glutino and Schär crackers 👉 Whats your fave G Free Cracker when nauseous? 💚 Glutino: amzn.to/49lUPF1 Schär: amzn.to/49pLwnB #Nausea #GlutenFree

"Whats your favorite k tape?" We have tried quite a few, but always go back to Kinesio Tex: It has not caused us too many skin issues, it has been a relatively easier & less painful #KinesiologyTape to remove + it stays on for longer than a day. We use diff colors to make taping easier 🦓 #EDS #hEDS

Have you heard of pacing? "Pacing is an energy management strategy focused on balancing activity and rest." 👉 www.psychologytoday.com/us/blog/disa... 👀📃 #ChronicIllness #EDS #raredisease #invisibleillness #disability #dynamicdisability #mentalhealth

😘🖕 If you know, you know 🩵 linktr.ee/thezebraalliance #chronicillness #raredisease #disability #dynamicdisability #mentalhealth #invisibleillness #EDS #ehlersdanlossyndrome

"Patients with #HereditaryAngioedema, particularly those w out attacks, exhibited more positive emotional patterns than healthy controls, and higher positive affect correlated w improved quality of life. Published in Scientific Reports" - @rarediseaseadvisor.bsky.social #RareDisease #chronicillness

"Pulmonary rehabilitation significantly enhances exercise tolerance + quality of life in patients w #ProgressivePulmonaryFibrosis, according to a meta-analysis of 33 clinical studies involving 1671 individuals w #InterstitialLungDisease" - @rarediseaseadvisor.bsky.social #PPF #ILD #chronicillness

So, what IS public health? We went to @jhu.edu Homewood campus and asked students what they think public health is. Here's how they responded (really good in our opinion!) Drop below what question we should ask next

My hands are super shakey, but its still pretty 🌌💜 There is emerging research about a connection between geomagnetic disturbances and #ChronicIllness flare-ups. Two e.g.'s are Inflammation and Nervous System Dysregulation 🔬🧬🧠 linktr.ee/thezebraalliance #NorthernLights #EDS #dysautonomia #raredisease

When you realize you need to do a bunch of updating on your web page, linktr.ee/thezebraalliance, GoFundMe, and catch up on research + get present to-do's done... 🤪🫩🫠🫩🤪 If you can relate 🙋‍♂️🙋‍♀️🙋 #ChronicIllness #EDS #raredisease #invisibleillness #chronicpain #mentalhealth #healthcare #selfcare

Arterial Fragility is a real thing: vEDS is the subtype more likely to suffer from arterial rupture, but it can happen to any subtype due to collagen abnormalities. EDS is FAR more than being bendy 🩵🦓🩵 #ehlersdanlossyndrome #ehlersdanlos #EDS #vEDS #chronicillness #raredisease

Do you mimic accents, body language, and/or gestures? You might live w Chameleon Effect. It is a Subconscious (Empathetic) Behavior. "The #ChameleonEffect has been shown to positively impact human social interactions." The founder of TZA & her mum live/lived with it 🦎 #ChronicIllness #mentalhealth

Aw we missed the milestone 😥 but Congratulations and Thank You for the work you do, @rarectadvocate.com 🩵🦓🩵

DYK: @achronicvoice.com lives with #EpiphrenicEsophagealDiverticulum, a #RareDisease 🦓 In her own words: achronicvoice.com/epiphrenic-e... Do you live with EED? If so, please share some of your experiences. #ChronicIllness

Whom else thinks these should be "mass" produced? 🙋‍♂️💯🙋‍♀️💯🙋 #wheelchair #disability #dynamicdisability #disabilities #chronicillness #mobilityaids #EDS #raredisease #invisibleillness

Do you have Classical EDS? What are 3 things you want people to know about living with cEDS? DYK: cEDS is a #RareDisease 🩵🦓🩵 #ceds #eds #ehlersdanlossyndrome #ehlersdanlos #chronicillness

Acknowledge and be proud of your perseverance, but also take a f@cking nap 🤗😅😉 🎨 @katieabey.bsky.social #healthmemes #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #mentalhealth

Cuts to Affordable Care Act subsidies highlight a troubling trend in health care costs. Swipe to learn what this means in insurance costs for Americans. Read more: publichealth.jhu.edu/2025/whats-b...

People who do not live with #Disability or #ChronicIllness will never understand what it is to grieve the life you had and the life you worked towards, every day: I used to snowboard, haul rocks & boulders, trail run, work home remodels, make jewelry, paint, find & hold a job + more. No more 😞

"Dear Mr President and Mr RFK Jr, Let me put this as simply as possible: Your wilfull ignorance about chronic illness and chronic disease is saddening and very dangerous." #chronicillness #EDS #ehlersdanlossyndrome #invisibleillness #raredisease #disability #dynamicdisability #mentalhealth

Do you have a loved one who lives with EDS + are their carer? Give this article from @ehlersdanlos.bsky.social a read 📖 Caregivers, please make sure to take care of yourself 🩵🦓🩵 #EDS #hEDS #ehlersdanlossyndrome #ehlersdanlos #chronicillness

Have you seen the new hEDS discoveries? Very interesting & explains a lot! Research shows immune dysregulation in hEDS, especially in the complement system and profibrotic cytokines, challenging the view of #hEDS as only a connective tissue disorder and suggesting innate immune involvement. #EDS

We all know getting steps in helps our physical and mental health, but we see more research coming out all of the time. Here’s how many daily steps may help delay Alzheimer’s symptoms. #health #alzheimers #walking #preventativemedicine

Do you have Long CoVid? What is something you would like people to know about it? #longcovid #PEM #covid #chronicillness

Do you have foot issues? Wool-It might be a great product for you! We use it and it's crazy how something so "simple" can have such a positive impact! We have a small inventory offering of Wool-It Bags and the cardboard Packs. Message us if interested in foot pain and blister relief 🩵🦶🩵

DYK when the Zebra Alliance Community was dreamed up, EDS was going to be the condition we address, but decided people w rare and chronic illnesses (across the board) also needed a Community. Long story short lol EDS and HSD are far from the only Connective Tissue Disorders. Learn about FOP 👇

There would be no current issue w the functionality of Medicaid, Medicare, and SS, or funding for SNAP & similar if Trump would do whats best for citizens. This nonsense about funding = a joke: Protest Near You? Are you in the US Legally w out a Criminal Record? PLEASE go Peacefully Protest!

Happy Halloween to our beloved Zebra Alliance Community! 🧙‍♀️🎃🦓🎃🧙‍♀️ 🧡 linktr.ee/thezebraalliance

What do you think their reply would be? Honest curiosity. 🙈🙉🙊😉 #ChronicIllness #raredisease #invisibleillness #dynamicdisability #mentalhealth #EDS #ehlersdanlossyndrome #meme #memes

A LOT of people in our community live w Chronic Nausea: What do you think unaware people should know? Other than color meanings 😉 💭 We think people should know that (severe) nausea with (severe) cramping/pain lasting more than a few hours/day should be addressed by a doc 🤢🎨😖😭🩺 #ChronicIllness

If you have wondered about Genetics, give this @ehlersdanlos.bsky.social article a read: www.ehlers-danlos.com/genetics-and... #genetics #genealogy #chronicillness #raredisease #invisibleillness #disability #ehlersdanlossyndrome #EDS

We know we have many Community Members that live w Long COVID, so we want to use this opportunity to ask you all to share your experiences living with Long COVID or another illness/condition/symptoms that were triggered/caused by COVID. #ChronicIllness

BREAKING NEWS: MDA and Parent Project Muscular Dystrophy have published new Consensus Guidelines to help standardize #GeneTherapy delivery for #Duchenne #MuscularDystrophy. Read the release ➡️ www.mda.org/press-releas...

I started warning people about O2 Bars when they became a big thing in CO approx 20 yrs ago when I was working in a pharmacy: Getting O2 from anyone other than a trained health professional is dangerous for many reasons, two being sanitatary practices and dosages.

#ACR25: In patients with the #EGPA type of #ANCA-associated vasculitis (#AAV) who receive #Mepolizumab treatment for 6 months, an impact on the formation of #NETs and #EETs has been observed. Read more: https://bit.ly/4oLOO97 #RareDisease #Rheumatology #RheumSky #MedSky

You are doing what is best for your (mental) health, nobody else's. Be proud! ✨️💜🫂💜✨️ Shaming people for taking medication for depression and anxiety shines a light on the bully, not the patient. Image by the talented @katieabey.bsky.social #MentalHealth

Another topic we were reminded of: Some Drs Don't Like Some Of Their Patients 👩‍⚕️👨‍⚕️ We know it sounds f@cked! But, for most, there are legit reasons 🙁👉 1 Reason: (Insurmountable) Resentment because the patient refuses to take Dr "orders" e.g. Go to PT = Patient is back repeatedly for the same issue 🥺

A 🦓 cmty member just reminded us of a topic that needs a little more light shed on it: Patients and families feeling like hostages (of docs and healthcare). DYK there is a term for this? Hostage Bargaining Syndrome (HBS) #chronicillness #raredisease #disability #dynamicdisability #mentalhealth #EDS

Have you been wanting to learn American Sign Language (ASL)? The image @softgritspoonie.bsky.social shared is great! If you use ASL - by need or choice - what tips do you have for people who want to learn?

Pee Funnels are great for people who can't sit/bend, have bad knees and/or hips, need accessibility to pee + the list goes on. Have you tried a pee funnel? If so, share your feedback. (People seem to love or hate them 😉) We love pStyle because theyre LGBTQ+ founded & owned + make the best funnel 💯🏳️‍🌈