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thezebraalliance.bsky.social
The Zebra Alliance Community
@thezebraalliance.bsky.social
290 followers 86 following 700 posts
The Zebra Alliance represents a beacon of hope and solidarity for navigating the challenging waters of Ehlers Danlos Syndrome, Rare Diseases, and Chronic Illness 🦓💙

Community • Education • Resources • Advocacy & Allies

https://linktr.ee/thezebraalliance
Posts Replies Media Videos
Reposted by The Zebra Alliance Community
rarediseaseadvisor.bsky.social
Pulmonary rehabilitation significantly enhances exercise tolerance and quality of life in patients with #ProgressivePulmonaryFibrosis (#PPF), according to a meta-analysis of 33 clinical studies involving 1671 individuals with #InterstitialLungDisease (#ILD).

Read here: https://bit.ly/43pV0v8
Pulmonary Rehabilitation Improves Function in Progressive Pulmonary Fibrosis
Pulmonary rehabilitation improved exercise endurance and quality of life in patients with progressive pulmonary fibrosis (PPF).
bit.ly
November 12, 2025 at 5:51 PM
thezebraalliance.bsky.social
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
Northern Lights where we are staying
November 12, 2025 at 3:16 AM
thezebraalliance.bsky.social
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
What productive days cost someone with chronic illness An energy crash that lasts 3 days Emotional dysregulation Flare Up Recovery takes days Belief I should be able to do this everyday Realizing I didn't do enough to feel caught up Delayed breakdown Guilt PAIN
November 12, 2025 at 12:52 AM
thezebraalliance.bsky.social
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
November 11, 2025 at 8:32 PM
Reposted by The Zebra Alliance Community
thezebraalliance.bsky.social
Post 2/2 How does it make you feel? Is it validating for you to know you are not alone?

#EDS #ehlersdanlossyndrome #raredisease #chronicillness #dysautonomia #POTS #health #disability #hEDS #dynamicdisability #mentalhealth #invisibleillness
January 24, 2025 at 4:07 PM
Reposted by The Zebra Alliance Community
thezebraalliance.bsky.social
Post 1/2 When I first ran across this video, it was so validating! Someone else deals with the same things; symptoms and judgments.
(The video had to be two posts as it's too long to be one.)
#EDS #ehlersdanlossyndrome #raredisease #chronicillness #dysautonomia #POTS #health #disability #hEDS
January 24, 2025 at 4:03 PM
thezebraalliance.bsky.social
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
Everything You Should Know About the Chameleon Effect
The chameleon effect is a phenomenon which causes us to mimic other people's gestures, behaviours, and mannerisms. Learn more about how it impacts you.
www.verywellmind.com
November 11, 2025 at 4:38 PM
thezebraalliance.bsky.social
Aw we missed the milestone 😥 but Congratulations and Thank You for the work you do, @rarectadvocate.com 🩵🦓🩵
rarectadvocate.com CT Rare Advocate @rarectadvocate.com · 8d
250 days. 250 Rare Diseases. Today I’m honored to share my 250th Rare Disease —raising awareness and hope for all impacted by rare conditions. Thank you for being on this journey with me! 🦓

Learn more: rarectadvocate.com

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
CT Rare Advocate - Rare Disease Information & Advocacy
Supporting rare disease patients, caregivers, and advocates with comprehensive information, resources, and daily awareness campaigns. You may be rare, but you are not alone!
rarectadvocate.com
November 11, 2025 at 4:20 PM
thezebraalliance.bsky.social
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
Epiphrenic esophageal diverticula
Epiphrenic esophageal diverticula (EED) are rare. The estimated incidence is about 1:500,000/year. EED usually result from a combination of esophageal obstruction, functional or mechanical and a point of weakness of the muscularis propria. Most of ...
pmc.ncbi.nlm.nih.gov
November 10, 2025 at 4:20 PM
thezebraalliance.bsky.social
Whom else thinks these should be "mass" produced? 🙋‍♂️💯🙋‍♀️💯🙋

#wheelchair #disability #dynamicdisability #disabilities #chronicillness #mobilityaids #EDS #raredisease #invisibleillness
November 10, 2025 at 12:35 AM
thezebraalliance.bsky.social
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
ehlersdanlos.bsky.social The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 6d
Today's video from Doctor Clair Francomano explains the key features of classical Ehlers-Danlos syndrome, including joint hypermobility, skin hyperextensibility (stretchy skin), and skin fragility. youtu.be/vohXwTqfRUU?...

#cEDS #ClassicalEDS #EhlersDanlosSyndrome #HealthProfessionals #Medicine
What You Need to Know About Classical EDS
YouTube video by Doctor Clair
youtu.be
November 8, 2025 at 4:13 PM
thezebraalliance.bsky.social
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
"Allow yourself to have the mother fucking nap" Colorful background with a rainbow "Tired of overcoming intense and exhausting thing but, nevertheless, I persist" Black cat with hiking bag and walking pole -> The Panther of Persistence "When you get tired learn to rest, not to quit" Picture of smiling napping cat with colorful background
November 7, 2025 at 4:51 PM
Reposted by The Zebra Alliance Community
johnshopkinssph.bsky.social
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...
Illustration of a telemedicine call, medication, and arrows showing an increase. Text reads: What’s Behind Rising Health Insurance Costs. The Affordable Care Act (ACA) was enacted to control rising health care costs—but key subsidies are set to expire at the end of the year. Gerard Anderson, professor in Health Policy and Management and International Health, unpacks elevating insurance costs and the ripple effects across health care providers. This information is sourced from Public Health On Call episode 972. Illustration of a doctor looking at someone who hurt their arm. Text reads: Health insurance premiums are increasing. What’s going on? As open enrollment begins, consumers buying insurance through ACA plans are seeing premiums rise by up to 59%. This is because of service prices, not quantity. It's not that people are using health care services more often than they were previously. It’s that prices for services keep going up, which increases insurance premiums. Illustration of a person on their phone looking at health care plans. Text reads: What role does ACA play in covering costs? About 30 million Americans are on ACA plans right now. These are people who typically do not have employer-based insurance—they work in the gig economy, at small firms that don't offer insurance, or are self-insured, for instance. For someone with an employer-sponsored insurance plan, the employer pays a significant portion of the insurance premium. Something similar happens for people receiving insurance under the Affordable Care Act, except with ACA subsidies, the government pays for part of the premium. illustration of pharmaceuticals. Text reads: Why are insurance costs going to be even higher? In the United States, each state’s market is different. It all depends on what type of insurance you have. Under some insurance plans, premiums are rising rapidly, while other plans might not go up. If you are on an ACA plan, you may now have to pay the full rate of insurance. This happens because the subsidies—your cost-sharing with the government—are being reduced, eliminated, or expiring.
November 6, 2025 at 5:43 PM
thezebraalliance.bsky.social
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 😞
"Grief is such a strong part of disability/chronic illness. With each new symptom or increased severity, we lose a little part of who we used to be. Lose our hobbies. Lose parts of our appearance. Lose our dreams and goals. Lose a little part of ourselves."
November 6, 2025 at 5:32 PM
thezebraalliance.bsky.social
"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
Dear Mr. President... | LUE Outdoors
www.lueoutdoors.org
November 6, 2025 at 3:22 AM
thezebraalliance.bsky.social
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
Caring for Someone with EDS or HSD - The Ehlers Danlos Society
www.ehlers-danlos.com
November 6, 2025 at 2:59 AM
thezebraalliance.bsky.social
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
Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology
Abstract. Hypermobile Ehlers–Danlos Syndrome (hEDS) is a poorly understood connective tissue disorder that lacks molecular diagnostic markers. This study a
academic.oup.com
November 5, 2025 at 8:03 PM
thezebraalliance.bsky.social
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
Here’s how many daily steps may help delay Alzheimer’s symptoms
In people at risk of Alzheimer’s, even a “modest” increase in daily steps — 3,000 steps per day or more — appeared to help slow cognitive decline, researchers said.
www.washingtonpost.com
November 4, 2025 at 5:54 PM
thezebraalliance.bsky.social
Do you have Long CoVid?
What is something you would like people to know about it?

#longcovid #PEM #covid #chronicillness
longcovidadvoc.com Long Covid Advocacy @longcovidadvoc.com · 10d
Anita is attempting to walk 140 miles by the end of December with Long Covid.

Whilst the motivation is admirable we are seriously concerned about the impact on her health, as she is describing symptoms of PEM.

www.bbc.co.uk/news/article...
'I have long Covid, but some say it isn't real'
Anita Widdowson says she battles with her symptoms every day, and is unable to work or study.
www.bbc.co.uk
November 3, 2025 at 2:35 PM
thezebraalliance.bsky.social
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 🩵🦶🩵
Who needs Wool-It? (100% authentic New Zealand Merino Wool: We know the owner) Anyone with sore feet Anyone who doesnt want sore feet "Thank you, Im a diabetic with really bad feet, bunions, corns, and calluses. Wool-It saves me daily, I wrap my toe with it and stops the pressure...Tried all other foot relief and this is the best allows me to keep playing bowls. Thank you!"
November 2, 2025 at 5:03 PM
thezebraalliance.bsky.social
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 👇
rarectadvocate.com CT Rare Advocate @rarectadvocate.com · 13d
Fibrodysplasia Ossificans Progressiva (FOP) is a rare genetic disorder where connective tissue gradually turns into bone, severely restricting movement and function over time.​

Learn more: www.ifopa.org

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
November 2, 2025 at 3:54 PM
thezebraalliance.bsky.social
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!
November 1, 2025 at 4:21 PM
thezebraalliance.bsky.social
Happy Halloween to our beloved Zebra Alliance Community! 🧙‍♀️🎃🦓🎃🧙‍♀️

🧡 linktr.ee/thezebraalliance
Happy Halloween to the Zebra Alliance Community! Whether you're in a zebra costume, carving pumpkins, or enjoying treats, Halloween embraces diversity and having fun. Wishing everyone a safe, magical, and Stripe-Tacular Halloween!
October 31, 2025 at 5:52 PM
thezebraalliance.bsky.social
What do you think their reply would be? Honest curiosity. 🙈🙉🙊😉

#ChronicIllness
#raredisease #invisibleillness #dynamicdisability #mentalhealth #EDS #ehlersdanlossyndrome #meme #memes
We couldn't find who made this image 😞 but.. Ring of flowers In the middle is words "You don't look sick" Cool. You don't look like someone who says dumb shit, but here we are.
October 30, 2025 at 6:51 PM
thezebraalliance.bsky.social
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
clevelandclinic.bsky.social Cleveland Clinic @clevelandclinic.bsky.social · 14d
Vomit comes in many colors, and each may tell us about what might be happening in your body. Use your best judgment. And don’t be afraid to contact your provider with questions. When it comes to vomiting, it’s always best to err on the side of caution.
October 30, 2025 at 5:35 PM