Partner Spotlight: Ehlers-Danlos Society

Ehlers-Danlos logo

Mobility+Designed understands that not all disabilities are visible.

Our team first learned about invisible illnesses when we learned of the Ehlers-Danlos Syndrome. Ehlers-Danlos Syndrome (EDS) is a group of inherited disorders that affect your connective tissues. For many living with EDS, walking without a mobility aid can be painful and scary due to the connective tissue disorder affecting the lower extremities.

In early 2020, one of our M+D Crutch users who lives with EDS followed up on her purchase. She explained her connective tissue disorder and how it affects her mobility. You can learn more about her story in the spotlight blog covering EDS and the loyal community we have built around it!

Since learning about the community, the Mobility+Designed team has committed to listening, understanding and helping the EDS Community. We have built so many special relationships with our Zebra Warriors and continue to add to our growing community of M+D Crutch users who live with EDS! In May (EDS awareness month), our team wore our zebra colors to celebrate #EDSAwarenessMonth! We have also participated in the Ehlers-Danlos Society 2020 Virtual Summer Conference where we voted for our favorite submission in the Zebra’s Got Talent – although they were all amazing!

EDS awareness

M+D Crutch: The Official Sponsored Crutch of the Ehlers-Danlos Society

After growing and building awareness for our favorite communities, we are happy to announce that we have officially partnered with the Ehlers-Danlos Society! At Mobility+Designed, we believe we can provide the best mobility solutions for our EDS Community. The M+D Crutch was designed for long-term users, like our EDS users, because it takes the weight and pressure off of the user’s hands and wrists. Long-term weight and pressure on the hands and wrists can create chronic pain and contribute to developing arthritis or carpal tunnel.

MD zebra warrior

The voices behind the Ehlers-Danlos Society

The Ehlers-Danlos Society is made up of a diverse group of individuals – some of whom live with EDS. We spoke with the Community and Advocacy Director, Shani Weber, to gain more insight into the organization. Shani joined the organization in 2012 after losing her career in special education due to disabling symptoms caused by her Hypermobile EDS.

“I learned all I could about types of Ehlers-Danlos syndromes. I joined the organization’s message board and, when others had questions to which I knew the answers, I responded. Within months, I was approached and asked if I would like to join the organization,” said Shani.

Over her nine years at the organization, Shani’s responsibilities have changed and continue to grow! “My role at the Ehlers-Danlos Society has greatly expanded, but I’m grateful for each day I can work with the Ehlers-Danlos Society and help to educate those with one of these conditions, their loved ones, and medical professionals about EDS and hypermobility spectrum disorders (HSD) and how to manage the symptoms they cause,” she said.

Most people who live with EDS recognize the Ehlers-Danlos Society to be the umbrella voice for the world of EDS. “We recognized a great need around the world for awareness and education about types of EDS and HSD and for those living with these conditions to have a home and a voice. We work hard towards a day where geography and wealth do not determine the quality of life for those living with a type of EDS or HSD,” said Shani.

The organization helps create awareness through global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, and community building. Learn more about these events. In May of 2021, which is EDS awareness month, Ehlers-Danlos Society made a goal of reaching 120,000 social media awareness posts for EDS. The organization created merchandise and “Act of Awareness Challenges” to spread the word about the rare disease.

More than “just a bit bendy”

There are many common misconceptions about people who live with Ehlers-Danlos Syndrome. Like many invisible illnesses, EDS is not always seen as a “real” disability and this invisibility creates misunderstandings. “Many believe, falsely, that having a type of Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD) means a person is “just a bit bendy” or that these conditions only affect the joints. The truth is that types of EDS and HSD are connective tissue disorders, that connective tissue is found throughout the body, and that these conditions can cause issues in many different body systems,” said Shani.

Education and awareness lead to answers for many unknowingly living with EDS.

The vast majority of the general population and medical community are unaware of the types of Ehlers-Danlos syndrome and hypermobility spectrum disorders that currently exist. This leads to long medical journeys from many looking to find an answer to their symptoms. “Many of those who have a type of EDS or HSD are not yet diagnosed. I encourage each of you to learn about these conditions and when to suspect a patient has one of them, how they are diagnosed, and how best to manage symptoms so that you can be part of the effort to improve their lives,” she said.

Ehlers-Danlos Society hopes to spread the word about this rare disease and create awareness so more people can access the organization’s resources and live a happier life!

Follow Ehlers-Danlos Society on Instagram and check out the organization’s website to learn more about how you can get involved in creating awareness for this rare disease community!

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