May Awareness – 31 Days of EDS & HSD

Day 1 – You and Your Part of the World

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

Day 2 – 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 3 – Wear it Wednesday – Zebra Strong!

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. 

Day 4 – Shine a Light on a Type of EDS or 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 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)

Day 5 – Warning Signs of Symptom Flare

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?

Day 6 – How You Feel About Your Body Today

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?

Day 7 – Celebrate a Win

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 8 – Fact or Stat About 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?

Day 9 – Life Hacks For 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

Day 10 – Walk & Roll Wednesday

Day 11 – Favorite Ways to Recharge Your Body

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?

Day 12 – Your Poems/Share A Quote

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

Day 13 – Point To Your Pain

Day 14 – Supporter Shout Out

Day 15 – Childhood & Teenage Years

Day 16 – Mental Health

Day 17 – Favorite Ways to Recharge Your Mind

Day 18 – Motivations

Day 19 – Wear #REDS4VEDS

Day 20 – Share A Smile!

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

Day 21 – Make a Promise to Yourself

Day 22 – Your Advice For Someone Newly Diagnosed

Day 23 – How Could Health Professionals Help More?

Day 24 – Helpful Advice You’ve Had

Day 25 – Behind The Scenes

Day 26 – Feel Good Friday! What Do You Love Doing?

Day 27 – Gift Ideas For People With Chronic Illness

Day 28 – 3 Things You’re Grateful For

Day 29 – What To Say To Someone With Chronic Illness

Day 30 – Accommodations That Would Help Me

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?

Day 31 – How Can Others Raise Awareness