This year, we mark ten years of progress, and look ahead to what’s possible next. Join us for 31 Days Forward: a month of sharing growth, education, research, management strategies, and hope through our Social Media Challenge.
Use the 31 daily prompts below to share your story in whatever way feels right: photos, reels, stories, or reflections. Tag us and use #MyEDSChallenge and #MyHSDChallenge so we can amplify your voice.
Tag @ehlers.danlos on Instagram or Facebook – Don’t forget to use the hashtags #MyEDSChallenge and #MyHSDChallenge in your posts and stories to reach more people and raise awareness.
Day 1 – Introduce Your Journey
Share your type of EDS or HSD (if comfortable), introduce yourself, and tell us where you’re from. Let’s show the global reach of our community.
Use our May social media profile frames — including EDS, HSD, and individual EDS type frames!
To add your frame:
Important: This is a free service on Twibbonize, but some users may be shown pop-ups or adverts depending on where they are located. Do not click on these, and do not input any credit card details as this is a free service.
Day 2 – Then and Now
Share a photo from earlier in your journey and one from today.
What has changed? What growth do you see — in knowledge, confidence, management, or perspective?
Day 3 – One Thing That Might Surprise You
What’s one thing about living with EDS or HSD that might surprise people?
It could be something practical, emotional, scientific, or everyday. Use today to gently educate and raise awareness in a way that feels authentic to you.
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 – What Helps Me Most
Share one management tool, routine, support strategy, or habit that supports your daily life.
Day 6 – Walk and Roll Wednesday
However you move — walking, wheeling, stretching, pacing your day, or supporting someone else — share how you’re taking part in the Walk and Roll Challenge.
Post a photo, a reel, or simply share what movement looks like for you today. Whether it’s 100 steps or a steady routine, every action raises awareness and supports progress.
Tag and let others know they can still join the Walk and Roll Challenge this May.
Day 7 – A Good Day Looks Like…
What does a “good day” mean for you? It doesn’t have to be big — maybe it’s manageable pain, steady energy, laughter, or rest. Share what that looks like.
Day 8 – What Good Care Looks Like
Describe what a supportive, informed healthcare experience feels like.
What makes an appointment work well? What makes you feel heard?
Day 9 – My Appointment Essentials
What helps you feel prepared and confident at appointments? Notes? Questions? Support person? Share what works for you.
Day 10 – A Question I Get Asked Often
What’s something people frequently ask about EDS or HSD, or your type specifically? Use today to educate and clarify.
Day 11 – A Practical Tip That Helps
Share one practical strategy that genuinely supports your daily life. It could be a pacing technique, mobility support, nutrition habit, sleep routine, mental health tool, or product that helps you manage EDS or HSD. Your tip might make someone else’s day easier.
Day 12 – Thank a Healthcare Professional
Recognize someone who made a positive difference in your care, or share why medical education matters.
The EDS ECHO program provides expert-led education to healthcare professionals worldwide, helping improve diagnosis and care. Every share helps expand access to informed care. Learn more at ehlers-danlos.com/echo
Day 13 – Living With Comorbidities
Many people in our community live with comorbidites. Comorbidities are health conditions that occur alongside a primary diagnosis. For people with EDS and HSD, these can include a wide range of issues affecting many different systems in the body, such as the heart, nervous system, digestive system, immune system, and mental health.
They can add complexity to daily life and make diagnosis and treatment more challenging but understanding them is key to getting the right care and support. Share one and how you manage it in a way that supports your well-being.
Day 14 – Something I’ve Learned From Research
Share a research insight that changed your understanding, gave you clarity, or gave you hope.
Day 15 – 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 16 – My Type, My Experience
What do you wish people understood about your specific type of EDS or HSD? Use today to educate and empower.
Day 17 – A Message to Someone Newly Diagnosed
If you could go back and speak to yourself at the start of your journey, what would you say?
Share encouragement, reassurance, or wisdom to help someone else.
Day 18 – What Rest Means to Me Now
Rest is not weakness. How has your understanding of rest changed over time?
Day 19 – One Boundary I’ve Learned to Set
Setting boundaries protects your health and energy. Share one boundary that has helped you grow.
Day 20 – POV: Living With EDS or HSD
Use a trending “POV” (point of view) format to share a relatable, educational, or light-hearted moment from your experience.
Day 21 – Representation Matters
Why is inclusive research, education, and medical imagery important to you?
Day 22 – A Resource That Helped
Share a webinar, support group, research article, or educational resource or program that made a difference in your understanding or management.
Day 23 – What Earlier Diagnosis Could Change
How could earlier recognition improve someone’s journey? Think of what opportunities and support could help.
Day 24 – Something I’ve Unlearned
Living with EDS or HSD often means unlearning internalized pressure, guilt, or unrealistic expectations. What have you unlearned?
Day 25 – Gratitude Moment
Share one thing, big or small, that you’re thankful for today.
Day 26 – Coordinated Care In Action
What would truly coordinated, collaborative care look like in your life? Paint a positive picture of what’s possible.
Day 27 – Growth I’m Proud Of
What personal growth have you experienced over the years?
Day 28 – What Progress Would Feel Like
Imagine progress over the next 10 years. What would that feel like for you or the community?
Day 29 – What Awareness Means in My Country
How does awareness show up where you live? What changes would you like to see?
Day 30 – Why Research Matters
Why is continued research essential for earlier diagnosis, better management, and improved quality of life?
Day 31 – Moving Forward Together
What gives you hope as we continue building awareness, research, and education for the next decade?
