May Awareness – 31 Days of EDS & HSD – DE

Tag 1 – Du und dein Teil der Welt

Introduce yourself! Who are you and where in the world are you celebrating EDS & HSD May Awareness Month from?

Tag 2 – Was man sehen kann und was nicht

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. ⁠

Tag 3 – Trag’ es Mittwoch 🦓 Zebrastark!

For Wear it Wednesday, wear something zebra striped and share how you are Zebra Strong!

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. 

Tag 4 – Stelle einen Typ von EDS oder HSD in den Blickpunkt

⁠The Light it Up Challenge is an annual May event that asks the community to request their local buildings and monuments be lit up 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 post about a type of EDS or HSD and raise awareness. You can find information below to create your post:

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)

Tag 5 – Warnzeichen eines Symptom Flareups

A symptom flare-up is a time when the symptoms we experience with EDS or HSD are exacerbated, coming on suddenly or worsening. Often we have triggers that make our symptoms worse; these could vary from person to person and include changes in temperature, certain food or environmental triggers, after periods of activity or increased activity, changes in weather, and many other reasons.

Do you get warning signs when your symptoms are about to flare up?

Tag 6 – Was denkst du heute über deinen Körper?

Describe how you feel about your body today. Is it taking you places (even if those places include the doctor’s office!)? Is it helping you to do something you love like dance or going on an outing? Are you resting and taking time to recover?

Tag 7 – Feiere einen Sieg!

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!

Tag 8 – Ein Fakt oder eine Statistik zu EDS & 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. 

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?

Tag 9 – Lifehacks für EDS & HSD

Life hacks are things that make our lives that bit easier. What are your favorite EDS or HSD life hacks? Here are some examples our community has shared about what helps them:

“Having a lightweight, foldable cane in my bag at all times, I can just take it out whenever I need it!” ~ Emilia

“With my journey so far of having vascular Ehlers-Danlos syndrome, I now take this badass binder to every hospital admission/specialist appointment and checkup. It contains all my health history and diagnostic letters, hospital information, vEDS information, and family history and it’s pretty much my big bad book of Bradley! I have everything I need in this sucker for Emergencies or appointments and I don’t have to worry about my paperwork going missing.” ~ Bradley

“My EDS Life Hack is that I store my ring splints in a pill case.⁠ I wear ring splints to prevent my joints from hyperextending when I’m typing, so I take them on and off a lot throughout the day. Instead of having to sort through 18 splints to find the right one for each joint, I keep my thumb splints in Sunday, my index splints in Monday, and so on. This makes it a lot easier to keep track of them and is great for travel.⁠” ~ Scarlett

“I’m mindful of the weight of cups! coffee mugs can vary greatly in weight and size/shape. Heavy awkward cups or utensils unnecessarily strain my hands, wrists, and fingers. I am even picky about my silverware.” ~ Sherry

Tag 10 – Geh’ und roll’ Mittwoch

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!) 2023 May Awareness embroidered 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! 

Tag 11 – Lieblingswege, um Energie für den Körper zu tanken

Rest, slow-paced movement, movie days, a bath soaking in magnesium salts, nutrition and hydration, or your favorite foods – what are your favorite ways to recharge your body after a challenging time physically?

Tag 12 – Deine Gedichte / Teil’ ein Zitat

Share a poem or quote that resonates with you and your journey with EDS or HSD.

Tag 13 – Weise auf deine Schmerzen hin

If people could see your pain, what would it look like?

Share a visual image of your pain. This could be a drawing, you pointing to where you experience pain in a photo, highlighting areas of pain with color etc.

Tag 14 – Shout-Out an Unterstützende

Who has supported you through the challenges of EDS or HSD? You are your champions, the people you call, the people who sit with you at appointments?

Give them a shout-out today, talk about them, say thanks, and tag them!

Tag 15 – Kindheits- und Jugendjahre

Talk about your childhood and teenage years.

What did you love doing, and what did you struggle with? What would have helped you if it was put in place when you were younger?

Tag 16 – Psychische Gesundheit

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.

Tag 17 – Lieblingswege, um mental neue Energie zu tanken

Netflix, sleep, mindfulness, reading, audiobooks, therapy, chatting with friends – what are your favorite ways to recharge your mind?

Tag 18 – Motivationen

What or who motivates you? It could be yourself, your kids, friends, family, passions or hobbies, or other members of the EDS or HSD community.

Tag 19 – Trag’ rot #REDS4VEDS

Friday, May 19, 2023, 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.

Tag 20 – Teil’ ein Lächeln!

It’s selfie day! Share a smile from wherever you are in the world.

Tag 21 – Versprich’ dir etwas

What promise will you make to yourself today? Take a step towards self-love.

Tag 22 – Dein Tipp für eine Person, die neu diagnostiziert ist

Trying to understand complex conditions such as EDS and HSD can feel overwhelming, especially for the newly diagnosed. Over time, those who live with EDS or HSD will learn more things that can help them develop strategies to tackle their health – and life.

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 and struggling to understand?

Tag 23 – Wie könnte medizinisches Fachpersonal besser helfen?

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?

Tag 24 – Wertvolle Tipps, die du bekommen hast

What’s the most helpful advice you’ve been given that has helped you with an aspect of your EDS or HSD?

Tag 25 – Hinter den Kulissen

What happens behind the scenes in your life? This is the side of EDS and HSD that people don’t see.

What is your life like at home, getting ready to go somewhere, at hospital appointments, using adaptions, or having medical devices to look after?

Tag 26 – Fühl’ dich gut Freitag! Was machst du gerne?

Let’s start a wave of positivity! What do you love doing? What are your passions, hobbies, or simple things in life that just make your smile?

Tag 27 – Geschenkideen für Menschen mit chronischen Erkrankungen

What would make a great gift idea for someone living with a chronic illness?

Tag 28 – 3 Dinge, für die du dankbar bist

A day of gratitude! Talk about 3 things you’re grateful for.

Tag 29 – Was man zu einer Person mit einer chronischen Erkrankung sagen kann

We all may have a list of things not to say to someone with a chronic illness, but what about things you should say?

Tag 30 – Anpassungsmaßnahmen, die mir helfen würden

An accommodation is a change that removes a barrier and helps you to work around your condition or disability. Accommodations provide equal access to people with disabilities and simply offer support to account for challenges.

Examples of accommodations include giving keyboards to students who struggle with handwriting, flexible work hours, and ergonomic or adaptive office equipment. What could help you to manage better at home, school, university, or in your workplace? What accommodations could teachers, employers, and others make to enable you to thrive in certain environments or situations?

Family and friends can also be accommodating to our health concerns, such as understanding when plans need to be canceled due to health issues, or adapting plans to ensure the environment is suitable for our current challenges. What accommodations have family or friends made that have helped you?

Tag 31 – Wie können andere für das Thema EDS & HSD sensibilisieren?

Family, friends, colleagues, classmates, your social media networks – many people close to us may want to raise awareness of the Ehlers-Danlos syndromes and hypermobility spectrum disorders, but where do they start? Find awareness materials here to share!