The Zebra Alliance Community
@thezebraalliance.bsky.social
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
Community • Education • Resources • Advocacy & Allies
https://linktr.ee/thezebraalliance
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
🩵🦓🩵
#chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability #mentalhealth
November 25, 2025 at 9:36 PM
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
🩵🦓🩵
#chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability #mentalhealth
Reposted by The Zebra Alliance Community
💜December 2nd is Giving Tuesday, & your gifts will have double the impact!
We're thrilled to share that a donor whose family understands the journey of #EhlersDanlossyndrome (EDS) and #hypermobilityspectrumdisorder (HSD), is matching your generous donations— dollar for dollar—up to $400,000!
We're thrilled to share that a donor whose family understands the journey of #EhlersDanlossyndrome (EDS) and #hypermobilityspectrumdisorder (HSD), is matching your generous donations— dollar for dollar—up to $400,000!
November 20, 2025 at 8:11 PM
💜December 2nd is Giving Tuesday, & your gifts will have double the impact!
We're thrilled to share that a donor whose family understands the journey of #EhlersDanlossyndrome (EDS) and #hypermobilityspectrumdisorder (HSD), is matching your generous donations— dollar for dollar—up to $400,000!
We're thrilled to share that a donor whose family understands the journey of #EhlersDanlossyndrome (EDS) and #hypermobilityspectrumdisorder (HSD), is matching your generous donations— dollar for dollar—up to $400,000!
Do you live with a #RareDisease and struggling to find care? NORD may have a facility near you 🩵🦓🩵
#Healthcare #Doctors #rarediseases #EDS
#Healthcare #Doctors #rarediseases #EDS
Centers of Excellence - National Organization for Rare Disorders
Centers of Excellence Archive - National Organization for Rare Disorders
rarediseases.org
November 25, 2025 at 6:28 PM
Do you live with a #RareDisease and struggling to find care? NORD may have a facility near you 🩵🦓🩵
#Healthcare #Doctors #rarediseases #EDS
#Healthcare #Doctors #rarediseases #EDS
Reposted by The Zebra Alliance Community
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
Learn more: https://bit.ly/4iqRVS0
Avapritinib Linked to Sustained Improvements in Skin Manifestations of Indolent SM
Patients with indolent SM and dermatologic involvement treated with avapritinib saw marked reductions in skin symptoms, skin color, and skin lesions.
bit.ly
November 25, 2025 at 5:40 PM
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
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.
⚕️ A NIH study found 3 / 10 study participants had ON symptoms. Its more common in athletes/fitness participants.
November 25, 2025 at 4:00 PM
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.
⚕️ A NIH study found 3 / 10 study participants had ON symptoms. Its more common in athletes/fitness participants.
Reposted by The Zebra Alliance Community
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
Read more: https://bit.ly/48hbqr8
#RareDisease #MF #Pulmonology
Read more: https://bit.ly/48hbqr8
#RareDisease #MF #Pulmonology
Patients With MF Face Increased Risk of Pulmonary Complications After HCT
Patients with MF are at substantially higher risk for pulmonary complications after hematopoietic cell transplantation.
bit.ly
November 25, 2025 at 3:25 PM
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
Read more: https://bit.ly/48hbqr8
#RareDisease #MF #Pulmonology
Read 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 🤗
November 25, 2025 at 3:52 PM
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
Sincerely,
Folks with #ChronicIllness 🩵
🖼 @thethrivingspoonie.com
#ChronicIllnesses
November 20, 2025 at 2:54 PM
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
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
Glutino:
amzn.to/49lUPF1
Schär:
amzn.to/49pLwnB
#Nausea #GlutenFree
November 18, 2025 at 2:50 PM
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
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
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
Kinesio Taping - Elastic Therapeutic Athletic Tape Tex Gold FP - Black – 2 in. x 16.4 ft
Buy Kinesio Taping - Elastic Therapeutic Athletic Tape Tex Gold FP - Black – 2 in. x 16.4 ft: Kinesiology Recovery Tapes - Amazon.com ✓ FREE DELIVERY possible on eligible purchases
amzn.to
November 17, 2025 at 9:08 PM
"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
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
"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
November 15, 2025 at 1:16 AM
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
"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
If you know, you know 🩵
linktr.ee/thezebraalliance
#chronicillness #raredisease #disability #dynamicdisability #mentalhealth #invisibleillness #EDS #ehlersdanlossyndrome
November 14, 2025 at 10:51 PM
"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
#RareDisease #chronicillness
Stable Disease Control in HAE Links to More Positive Mood and Better QoL
Patients with hereditary angioedema, especially those without recent attacks, reported more positive emotions than healthy controls.
bit.ly
November 14, 2025 at 10:46 PM
"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
#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
#PPF #ILD #chronicillness
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 14, 2025 at 10:44 PM
"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
#PPF #ILD #chronicillness
Reposted by The Zebra Alliance Community
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
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
November 14, 2025 at 9:02 PM
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
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
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
November 12, 2025 at 3:16 AM
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
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
#ChronicIllness
#EDS #raredisease #invisibleillness #chronicpain #mentalhealth #healthcare #selfcare
November 12, 2025 at 12:52 AM
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
#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
#ehlersdanlossyndrome #ehlersdanlos #EDS #vEDS #chronicillness #raredisease
November 11, 2025 at 8:32 PM
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
#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
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
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
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 🩵🦓🩵
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
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
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
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
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
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
#wheelchair #disability #dynamicdisability #disabilities #chronicillness #mobilityaids #EDS #raredisease #invisibleillness
Drifting #wheelchair. They should mass produce these, they'd do numbers.
#disability #disabilities
www.youtube.com/shorts/n20pR...
#disability #disabilities
www.youtube.com/shorts/n20pR...
We Built a Drifting Wheelchair
YouTube video by HTX Studio
www.youtube.com
November 10, 2025 at 12:35 AM
Whom else thinks these should be "mass" produced? 🙋♂️💯🙋♀️💯🙋
#wheelchair #disability #dynamicdisability #disabilities #chronicillness #mobilityaids #EDS #raredisease #invisibleillness
#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
What are 3 things you want people to know about living with cEDS?
DYK: cEDS is a #RareDisease 🩵🦓🩵
#ceds #eds #ehlersdanlossyndrome #ehlersdanlos #chronicillness
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
#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
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
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
🎨 @katieabey.bsky.social
#healthmemes #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #mentalhealth
November 7, 2025 at 4:51 PM
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
🎨 @katieabey.bsky.social
#healthmemes #chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #mentalhealth
Reposted by The Zebra Alliance Community
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...
Swipe to learn what this means in insurance costs for Americans.
Read more: publichealth.jhu.edu/2025/whats-b...
November 6, 2025 at 5:43 PM
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...
Swipe to learn what this means in insurance costs for Americans.
Read more: publichealth.jhu.edu/2025/whats-b...