Raise Awareness on Social Media – 31 Days of EDS & HSD
Join The Ehlers-Danlos Society to help increase awareness of EDS and HSD, globally, by raising awareness on social media during the month of May!
How can I take part?
Use the 31 daily themes below as prompts for your social media posts, photos, or videos. Tag @ehlers.danlos on Instagram or Facebook – we will repost and share as many photos and videos from the community as we can!
Don’t forget to use the hashtags #MyEDSChallenge and #MyHSDChallenge in your posts and stories to reach more people and raise awareness.
31 Days of EDS & HSD – Daily Social Media/Writing Prompts!
Day 1 - May 1
Day 1 – Meet Me!
Introduce yourself and share your connection to EDS or HSD.
Day 2 - May 2
Day 2 – My Diagnosis Journey
How did you get diagnosed (or what’s your journey so far)?
Day 1 - May 3
Day 3 – Misconceptions I’ve Heard
What’s a myth or misunderstanding about EDS or HSD?
Day 1 - May 4
Day 4 – Light It Up Orange
The Light it Up Challenge is an annual May event that asks the community to request their local buildings and monuments be lit up in orange for awareness on May 4.
Another way to shine a light on these conditions is to upload our May Awareness Month profile frames to your social media channels. Click here to add yours. Wear orange and light up social media!
Day 5 - May 5
Day 5 – What You See vs. What You Don’t
Share the realities of living with EDS or HSD.
Day 6 - May 6
Day 6 – Life Hacks
What tips & tricks help you manage daily life?
Day 7 - May 7
Day 7 – My Theme Song
Share a song that represents your journey!
Day 8 - May 8
Day 8 – The Reality of EDS and HSD
You may struggle with pain, fatigue, or many other symptoms due to EDS or HSD – What do your symptoms really feel like?
Day 9 - May 9
Day 9 – My Most Challenging Symptom
What impacts you the most?
Day 10 - May 10
Day 10 – The Health Professional Who Listened
Give a shoutout to a healthcare professional who helped you.
Day 11 - May 11
Day 11 – Small Wins Matter
What’s something you’ve accomplished despite your EDS or HSD that you’re proud of?
Day 12 - May 12
Day 12 – EDS ECHO Challenge
The EDS ECHO program provides expert-led education to health professionals to help improve diagnosis and care worldwide.
Your challenge? Help raise awareness!
- Tell a healthcare provider about EDS ECHO.
- Share the program on social media.
- Tag a medical professional who should know about it.
Our goal is to have health professionals enroll from around the world and join the network. Every share helps bring better-informed care to our community! Learn more at ehlers-danlos.com/echo
Day 13 - May 13
Day 13 – The Symptoms That Were Overlooked
Looking back, what signs were brushed off before realizing they were part of your condition?
Day 14 - May 14
Day 14 – A Conversation That Changed My Life
A doctor, a friend, or even a stranger—share a moment where someone’s words made a real difference in your journey.
Day 15 - May 15
Day 15 – What I Wish People Knew
What’s one thing the world should understand about EDS and HSD?
Day 16 - May 16
Day 16 – Wear #REDS4VEDS
Friday, May 16, 2025, is global #REDS4VEDS Day! A day dedicated to raising awareness of vascular Ehlers-Danlos syndrome (vEDS) and showing support for people living with this condition. To take part, simply wear red, take a selfie, and post it on social media using the hashtag #REDS4VEDS.
What is vEDS?
vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax. vEDS can cause symptoms in many different areas of the body, so people with vEDS may require multiple providers in different specialties to manage their care.
Find vEDS awareness resources here.
Day 17 - May 17
Day 17 – My Support System
Pets, friends, family, online communities—who has your back?
Day 18 - May 18
Day 18 – The Mental Health Side
Share how EDS or HSD impacts mental well-being.
Day 19 - May 19
Day 19 – Reel Challenge!
Post a short video about your journey (it can be a TikTok/Instagram or Facebook Reel/YouTube short)
Day 20 - May 20
Day 20 – My Medical Must-Haves
Devices, braces, medications—what helps you daily?
Day 21 - May 21
Day 21 – Barriers to Care
What challenges have you faced in getting the right treatment?
Day 22 - May 22
Day 22 – My Dream Medical Appointment
If you could design the perfect visit, what would it include?
Day 23 - May 23
Day 23 – My Hope for Research
What breakthroughs would change your life?
Day 24 - May 24
Day 24 – How I Advocate
How do you spread awareness for EDS and HSD or advocate for yourself?
Day 25 - May 25
Day 25 – The Best Advice I’ve Received
What’s a valuable tip from a provider or fellow zebra?
Day 26 - May 26
Day 26 – Words to My Younger Self
What advice would you give past you?
Day 27 - May 27
Day 27 – The Future of EDS and HSD
What do you hope will change in the next 10 years?
Day 28 - May 28
Day 28 – My Biggest EDS or HSD Learning Moment
What’s something that changed how you manage your condition?
Day 29 - May 29
Day 29 – Celebrate the Community
Tag a fellow zebra who inspires you!
Day 30 - May 30
Day 30 – The Moment I Felt Seen
A time when someone truly understood your condition, whether a doctor, friend, family member, or stranger.
Day 31 - May 31
Day 31 – Thank You for Raising Awareness!
Thank you for taking part this May. Share a message of appreciation for everyone who took part, shared, and supported awareness this month—especially to yourself!
Share the 31 Days of EDS and HSD challenge on social media!
Simply hold and save one of the graphics below, whether you’re sharing on Facebook, LinkedIn, Instagram, in stories, or elsewhere.
