Awareness Month 2019 — Daily Challenges

Join the Daily Challenge!

Living with EDS/HSD is full of challenges in itself. Share your story with your friends and followers and help us raise awareness by completing our Daily Challenge activities and posting them to social media. Make sure to include #myEDSchallenge or #myHSDchallenge in your post to be featured in our gallery or use this form! Let’s make the Ehlers-Danlos syndromes and hypermobility spectrum disorders go viral this May!

Complete at least 20 challenges throughout the month and earn a limited edition T-shirt! Posts must clearly demonstrate the completion of each task and must include either #myEDSchallenge or #myHSDchallenge. Request your T-shirt by sending us your posts through this form.

 

#myEDSchallenge  #myHSDchallenge

Awareness Resources and Tips

  • Check out our printable EDS and HSD awareness brochures and posters, as well as digital presentations, on our Awareness Materials Page.
  • Download our EDS/HSD Awareness Challenge frame <link coming> to use on your Awareness Challenge photos and share with family and friends or use the official EDS/HSD Awareness Challenge Facebook profile and photo frames <link coming>.
  • When posting to social media remember to:
    • Be eye-catching. “Stop the scroll” and capture attention by including interesting, high-quality photos or videos.
    • Be engaging. Tell interesting, honest, heartfelt stories.
    • Be credible. Share EDS/HSD info with correct terminology and facts from credible sources like our EDS/HSD information pages and Awareness Materials page.
    • Be responsive. Encourage your followers and friends to ask questions on your posts, and make sure to answer as well as you can.
  • Earn a limited edition T-shirt by completing 20 Daily Challenges OR by raising $40 or more on your Individual Fundraising Page—click/tap here to create a US-based fundraising page and click/tap here to create a UK/EU-based page. Then share your page with your networks using our easy email and social media templates. To claim your T-shirt, please submit this form for Daily Challenges or this form for Fundraising Challenges.
  • Use our special Supporters Logo to create and share on your own awareness messages.
  • Use one of the hashtags (#myEDSchallenge or #myHSDchallenge) or use this form to submit your photos to our gallery.

1

SHARE YOUR JOURNEY
CHALLENGE

What was your journey to diagnosis like? What were the initial onset of symptoms, and how did you eventually get diagnosed?

2

FLARE DAY
CHALLENGE

EDS/HSD can be incredibly overwhelming when symptoms flare. It can be incredibly difficult to talk about these days, but it’s a true depiction of what those with EDS and HSD can suffer frequently. Share your reality.

3

SHATTER THE STIGMA
CHALLENGE

EDS/HSD is not “all in your head,” yet individuals with EDS/HSD can also experience mental health challenges. Share your mental health challenge story and direct your friends to the mental health care toolbox.

4

LIFE HACK
CHALLENGE

What innovative solution have you found to fix a problem that’s been created by your EDS/HSD or related disorder?

5

CLINIC BROCHURE
CHALLENGE

Help us raise awareness within the medical profession — and also with those needing answers! Take a stack of our printable brochures on EDS, HSD, and Project ECHO® to your doctor’s or physical therapist’s office, your dentist, your podiatrist — any of your health care team! Together we can reach more professionals and patients globally. Click here for our printable awareness materials.

6

SPONTANEOUS
AWARENESS CHALLENGE

Have you ever had a frustrating interaction with someone who clearly didn’t understand your EDS/HSD? Instead of walking away upset, take a few moments to talk to that person about EDS/HSD and how it affects you.

7

MY EDS/HSD HERO
CHALLENGE

There are so many incredible people who live with EDS/HSD. Whether this person is a personal friend and mentor or someone you follow who is doing great work for the community, share who has had the biggest impact on your life.

8

DIFFERENT STRIPES
CHALLENGE

Every zebra has different stripes, and everyone with EDS/HSD has different physical appearances, related symptoms and conditions, treatment and strategy approaches, and symptom severity. What is unique about your stripes?

9

UNSELFIE
CHALLENGE

Turn your selfie into an #UNselfie! Take a selfie, but instead of showing your face, share with your friends why you raise EDS/HSD awareness, why you joined the EDS Global Registry, or why you support the work of The Ehlers-Danlos Society.

10

#HospitalGlam
CHALLENGE

Raise awareness from your appointment, hospital on on your medical journey (patient focused not procedure) to show the reality and the difficulties of chronic illness.

11

HEALTHCARE
CHALLENGE

Validation is everything. Tell us about the impact a supportive health professional had on your life/EDS journey.

12

RELATED CONDITION
CHALLENGE

What diagnoses do you have along with EDS/HSD? Tell your followers about your EDS/HSD related symptoms and conditions.

13

STRIPE YOUR WORLD
CHALLENGE

Organize a day at your school, workplace, or organization encouraging all to wear zebra stripes for EDS/HSD awareness! Show us how you stripe your world!

14

STRIPE YOURSELF
CHALLENGE

How much zebra can you fit in one photo? Share your most zebra-striped selfie and tell your followers why individuals with EDS/HSD identify as zebras.

15

FAMILY
CHALLENGE

How have your family (or friends) supported you and made a difference to your lives? This could be your family or your EDS/HSD family. Tell us about the importance of support.

16

INFOGRAPHIC
CHALLENGE

Draw or create a compelling image that spreads awareness about an EDS/HSD fact.

17

#Reds4vEDS
CHALLENGE

It’s #Reds4vEDS day! Tell your followers why you are wearing red to raise awareness for vascular Ehlers-Danlos syndromes!

18

ZEBRA STRONG
CHALLENGE

How are you #ZebraStrong?

19

SUPPORTER
CHALLENGE

You don’t have to have EDS/HSD to support May Awareness. For those unaffected members of our community, share why you support EDS/HSD awareness.

20

SHOW YOUR INVISIBLE
CHALLENGE

If someone could see your EDS/HSD symptoms, what would that look like?

21

VISUAL ARTS
CHALLENGE

Share a painting, drawing, sculpture, or other visual art that explains what is it like to have EDS/HSD and/or an associated symptom or condition.

22

ADVICE
CHALLENGE

Tell us your advice for someone newly diagnosed with EDS or HSD.

23

EDS ECHO®
CHALLENGE

We are working towards a time when geography and wealth no longer determine your quality of life. Help us have 1000 new EDS experts by 2022 by telling your health professionals about EDS ECHO®! Download the flyer or ask them to visit ehlers-danlos.com/echo to join the program.

24

TOOLBOX
CHALLENGE

What do you love doing? What do you keep in your toolbox to make the challenging aspects of EDS/HSD a little easier to manage?

25

DIRECTION
CHALLENGE

How has your diagnosis affected or changed your life?

26

SELF-CARE
CHALLENGE

“You cannot pour from an empty cup.” Self-care isn’t selfish, it’s a necessary part of living with a chronic condition. Tell us your self-care strategies, what you like doing to rest and recharge, and how you ensure you take time for you.

27

MOTIVATION
CHALLENGE

Describe your hopes for EDS/HSD, yourself, and the community for 2019 and beyond! Together we dazzle.

28

“CONNECT”
CHALLENGE

Help us raise awareness and tell the world about the issues that truly matter to our community! Ask five friends to join the CONNECT newsletter to keep up to date with the latest research, developments, and community stories on EDS and HSD.

29

HONESTY CHALLENGE

How has your diagnosis affected or changed your life?

30

REGISTRY CHALLENGE

The Global Registry is a vital tool that will help researchers uncover the unknown in the Ehlers-Danlos syndromes and hypermobility spectrum disorders. Do your part and sign up today — this is a GLOBAL registry and we need participants from all around the world to help with research and understanding the prevalence of EDS and HSD! You can join the registry if you have an EDS or HSD diagnosis or a suspected diagnosis.

31

MAY WRAP-UP CHALLENGE

Describe your hopes for EDS/HSD, yourself, and the community for 2019 and beyond! Together we dazzle.