2022 May Awareness – Contact Your Local Government Challenge

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What is the Contact Your Government Challenge?

Join The Ehlers-Danlos Society to help increase awareness of EDS and HSD by taking on the Contact Your Government Challenge for May Awareness Month!

For years now, the challenges of the COVID-19 pandemic have made the situation even more difficult for those living with EDS and HSD with delayed or canceled appointments, treatments, genetic testing, and diagnosis, to accessing care and therapies they depend on for quality of life.

Now more than ever, we need the global EDS and HSD community, health care professionals, businesses, policy-makers, and individuals across the world to help us push forward with research and education to improve care.

Every request counts as 5 Acts of Awareness towards the global goal of 150,000 Acts of Awareness this May. Earn Society merchandise in our special May Awareness incentive tiers!

How do I take part?

WRITE, CALL, or RALLY elected officials and local media about the challenges people and families living with EDS or HSD each day face every day—calling for better access to medical, dental, and mental health care; physical therapy, pain management, and prescription coverage.

Write a letter to a key policy-maker in your community to highlight the importance of addressing the needs of people affected by EDS and HSD. Use our handy email template below or download the document to write a letter.

To advocate for change with your government, learn how your government or the department of the government with which you wish to engage is organized. This includes learning the best ways to contact them and who specifically the decision-makers are.

EMAIL TEMPLATE 

SUBJECT

May is EDS and HSD Awareness Month


EMAIL BODY

Dear [ENTER NAME], 

My name is [ENTER NAME]. I live in [ENTER CITY, STATE, COUNTRY], and I am writing to you about Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month this May.  

As a [PERSON LIVING WITH EDS/HSD] [FAMILY MEMBER OF SOMEONE LIVING WITH EDS/HSD] this issue is extremely important to me because [GIVE REASONS ABOUT YOUR DIAGNOSIS/CURRENT SITUATION/CHALLENGES OR YOUR FAMILY MEMBER’S EXPERIENCES.] 

The Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) are complex, multisystemic conditions that affect people of all ages, genders, and races.   

The average time to diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) is 10-12 years: for some, it can take decades. Early diagnosis is crucial to positive health. 

As these conditions are multi-systemic, the problems often go unconnected for many years. Many report being told their symptoms “are all in their head” or that they cannot possibly be experiencing the pain or other symptoms they say they are. Misdiagnosis is common, delaying treatment, or resulting in unnecessary surgeries or unsuitable treatments. 

Once diagnosed, there is often little or no follow-up care, and often at the point of diagnosis, patients are not given information on their condition, how to self-manage aspects of their care, adaptions that can be made to improve quality of life, or where to find support for a lifelong, chronic condition. 

People in the EDS and HSD community have been turned away from Emergency Rooms or had treatment delayed due to misconceptions or lack of knowledge on the different types of EDS, HSD, and their associated conditions. This needs to change. 

Please reply to my letter and outline the steps that can be taken to address these concerns. Please escalate my letter of concern to the relevant department and keep me informed of any progress.  

I look forward to hearing from you. 

Kind regards,  

[ENTER NAME] 

[ENTER ZIP CODE/POST CODE/AREA CODE] 

How do I submit my Acts of Awareness? 

The Contact Your Government Challenge = 5 Acts of Awareness.  Submitting your Acts of Awareness simple! 

  1. Let us know when you have submitted your request to your Government on this form, attaching a screenshot of your submission evidence. This will help us to move our awareness thermometer closer to the goal of 150,000 acts of awareness throughout May! 
  1. Share your efforts on social media. Social media is a great way to reach people and raise awareness. Be sure to tag @ehlers.danlos in your posts and we will repost and share as many as we can! Use the hashtags #MyEDSChallenge and #MyHSDChallenge

Be sure to have submitted all of your acts of awareness by June 7, 2022, in order to claim your May awareness incentives.