May Awareness – Social Media Challenge
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, Facebook, Twitter, or TikTok – 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 – Share a Selfie!
Introduce yourself! Who are you and where in the world are you celebrating EDS & HSD May Awareness Month from?
Day 2 – What is EDS and HSD?
Sharing facts and statistics is a great way to raise awareness, using accurate and evidence-based information on EDS and HSD. You can share a stat or fact about any aspect of the Ehlers-Danlos syndromes or hypermobility spectrum disorders, but here are a few suggestions:
What is EDS? The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility. The 13 types of EDS are:
Arthrochalasia EDS (aEDS)
Brittle Cornea Syndrome (BCS)
Cardiac-valvular EDS (cvEDS)
Classical EDS (cEDS)
Classical-like EDS (clEDS)
Dermatosparaxis EDS (dEDS)
Hypermobile EDS (hEDS)
Hypermobility spectrum disorders (HSD)
Kyphoscoliotic EDS (kEDS)
Musculocontractural EDS (mcEDS)
Myopathic EDS (mEDS)
Periodontal EDS (pEDS)
Spondylodysplastic EDS (spEDS)
Vascular Ehlers-Danlos Syndrome (vEDS)
What is HSD? Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other problems such as fatigue, headaches, GI problems, and autonomic dysfunction are often seen as part of HSD.
What is known about the prevalence of EDS and HSD?
Day 3 – Zebra Strong
Share how you are Zebra Strong or what being Zebra Strong means for the EDS and HSD community. Wear zebra stripes if you have something to hand, at home, at work, or school!
The zebra is our symbol and we are Zebra Strong. No two zebras have identical stripes just as no two people with a type of EDS or HSD are identical. We have different symptoms, different types, and different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with these conditions, reducing the time to diagnosis, and improving pathways to care.
Living with an EDS or HSD is not easy. Being zebra strong is facing challenges with EDS or HSD, facing struggles and difficulties daily. Being zebra strong is making adaptions to continue doing things you love, or adapting to no longer being able to do things you may have once done. Being Zebra Strong is finding strength in the face of adversity, or just weathering the storm.
Day 4 – Orange for EDS & HSD
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! Thank you to those who submitted requests this year, we look forward to seeing buildings all around the world shining a light on EDS and HSD.
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.
Day 5 – #SelfCareSunday
How do you practice self-care while living with EDS or HSD? Share your favorite self-care activities.
Day 6 – #MedicalMonday
Share a helpful tip for navigating the medical system with EDS or HSD. What advice would you give to someone newly diagnosed?
Day 7 – #TreatmentTuesday
Share a treatment or therapy that has helped manage your EDS or HSD symptoms. If you’ve not found anything that helps you, talk about that and ask others what has helped them.
Day 8 – Walk & Roll Wednesday
People are struggling all around the world, in need of advancements in research, advice and support, and education of health professionals to care for them. Help us raise awareness around the globe and reach 25,000 miles this May (the Earth’s circumference). Whether you take on 25 steps, 25 miles, or 250 miles in May, you’re making a difference for people all around the world affected by EDS and HSD. Why not take on 25 miles for someone who can’t or in memory of a loved one?
You can take part in an activity of your choice – this could be walking or wheeling up and down the length of your garden, going for a walk or run using a treadmill, using a wheelchair or adaptive device, cycling, or walking anywhere you can enjoy. You can take part in a walk or roll today or any day during May, but we’d love to see your photos and videos of your Walk & Roll Wednesday around the world today!
Raise over $60 during the month of May and receive our Limited Edition (and exclusive to fundraisers!) 2024 May Awareness t-shirt. Together, we can advance care, access, research, and education!
Join our campaign and fellow supporters around the world on Tiltify. You can learn more here!
Day 9 – #ThrowbackThursday
Share a throwback photo or memory from a time that means something special to you.
Day 10 – What You See, What You Don’t
EDS and HSD can affect many areas of the body, often at the same time.
You may see someone using mobility aids and recognize a visible disability . You may also see someone and not see their disability. They may have a non-visible disability. Having a non-visible disability can affect someone’s life as much as a visible disability.
A person may need mobility aids all of the time. A person may need a mobility aid some days, but not others depending on their symptoms. A person’s symptoms may fluctuate in severity on some days, requiring more support, rest, or mobility aids than on other days. Someone may see you socializing, at work, or at school, and not see symptoms of your EDS or HSD. They may not see the days with fatigue, pain, and other symptoms.
Describe or visualize what people may see on the surface, but what they don’t often see you going through.
Day 11 – Awareness Art
Share your artistic expression of EDS or HSD awareness. It could be a drawing, painting, a photograph, or any form of creative expression.
Day 12 – Experiences with Health Professionals
Share a positive experience with a health professional and what they did that helped you. Listening, validating, having more time to spend with you, templates and records to help capture your symptoms better – what ways could health professionals help you more?
Day 13 – Finding Comfort
Share a photo or video of something that brings you comfort during flare-ups of symptoms or difficult days.
Day 14 – Facing Adversity
Create a post about an accomplishment you’re proud of despite living with the challenges your condition brings.
Whether a teeny tiny step or a giant leap, celebrate a win today. Progress in physical therapy, completing a project, achieving a goal. Whatever the size of the win, let’s celebrate you!
Day 15 – Mental Health
Today is the start of Mental Health Awareness Week.
Chronic illness and emotional and mental health concerns can often occur together, and, can have a negative impact on each other. They need equal consideration to avoid either being misunderstood or undertreated — and EDS and HSD are no different.
EDS and HDS can force a person to focus on their body. But their emotional and mental health is just as important as their physical health. It is important to understand the connection.
The stress of dealing with any chronic illness creates understandable pressures. Having serious physical symptoms remain unexplained or dismissed as “in your head” can trigger a number of emotions and a low mood. It can cause disappointment, frustration, or anger for example. Constantly coping with pain, fatigue, and other symptoms, and not having answers or treatment can cause distress, depression, and anxiety.
So many in our community still face these issues daily, and it delays and impacts treatment. We see today as a vital day of awareness: for health professionals and society to understand the challenges of EDS and HSD, associated comorbidities, and the impact this can have on physical and mental health, self-awareness, and validation.
If you or a person you know with EDS or HSD is struggling with either their physical symptoms, or mental health concerns it is essential that these are heard, understood, and helped.
You’re not alone. It’s good to talk. Let’s break the stigma and talk about mental health today.
Day 16 – Reflections
Reflect on something you’ve learned from living with EDS or HSD and how it has changed your perspective on life.
Day 17 – Wear #REDS4VEDS
Friday, May 17, 2024, 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.
Key aspects of care focus on monitoring and managing arterial and organ fragility. It is recommended that people with vEDS have an emergency plan in place and make lifestyle modifications to minimize the risk of complications. Learn more.
Find vEDS awareness resources here.
Day 18 – Personal Growth
Reflect on a moment of personal growth or resilience that has emerged from your journey with chronic illness.
Day 19 – Finding Calm
Share a photo or video of a place that brings you peace and calmness during stressful times.
Day 20 – Share A Smile
It’s selfie day! Share a smile from wherever you are in the world.
Day 21 – World Meditation Day
Participate in an activity that promotes overall well-being, such as mindfulness meditation. Here are some mindfulness meditation activities that people can try:
- Breathing Meditation: Breathing meditation is a mindfulness practice that involves focusing on the breath. Find mindfulness resources on our YouTube channel here.
- Walking Meditation: Take a slow, mindful walk, paying attention to each step, the sensations in your feet, and the environment around you. Focus on the movement of your body and the sights, sounds, and smells you encounter.
- Visualization Meditation: Imagine yourself in a peaceful, serene place, such as a beach or forest. Engage your senses by visualizing details like the warmth of the sun, the sound of waves, or the rustle of leaves.
- Loving-Kindness Meditation: Cultivate feelings of compassion and kindness towards yourself and others.
- Gratitude Meditation: Reflect on things you’re grateful for in your life, big or small.
- Sound Meditation: Focus your attention on the sounds around you, whether it’s the chirping of birds, the hum of traffic, or the rustling of leaves. Notice each sound as it arises and passes away without getting caught up in judgments or thoughts.
- Guided Meditation: Use guided meditation recordings or apps led by experienced teachers to help you through various mindfulness practices, offering prompts and instructions along the way.
Remember, the key to mindfulness meditation is to bring non-judgmental awareness to the present moment, whether you’re focusing on your breath, sensations in your body, or external stimuli. Experiment with different techniques to find what resonates best with you.
Day 22 – Hobbies and Passions
Discuss a hobby or activity that brings you joy and helps you cope with your condition.
Day 23 – Misconceptions
Post about a misconception people commonly have about your condition and correct it with accurate information.
Day 24 – A Day with EDS or HSD
Post about an aspect of your daily routine that helps you manage symptoms and maintain a sense of normalcy.
Day 25 – Barriers to Care
Post about a challenge you’ve faced in accessing healthcare or finding appropriate treatment for your condition.
Day 26 – Finding Positives
Highlight a positive aspect of your life that has been influenced by your journey with chronic illness.
Day 27 – Support Systems
Post a photo or video of your support system and thank them for their understanding and encouragement.
Day 28 – Gratitude
Share a gratitude list of things you’re thankful for despite the difficulties of living with chronic illness.
Day 29 – Living Well With EDS or HSD
Share your experiences or tips for living well with Ehlers-Danlos syndrome or hypermobility spectrum disorder. What has helped you?
Day 30 – What led me to diagnosis
What were the symptoms or medical experiences that you had that led to your diagnosis?
Day 31 – Tips & Tricks
What is one thing you now know or understand that has had the biggest impact on your EDS or HSD journey? What would you tell those who are newly diagnosed that you wish someone had told you?
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, Twitter, LinkedIn, Instagram, in stories, or elsewhere.
To read in your preferred language, click below:
