05 Aug Ehlers-Danlos Syndrome – An Invisible Illness
We are brought up to believe that invisibility is a state where the user is unseen to the naked eye. The idea of invisibility often seems like a superpower that only heroes possess in an alternative universe or a comic book. And it is human nature to only believe in things we can physically see, but what about things we cannot see?
Not every disability is physically visible. In fact, according to the Disabled World, an estimated 96% of chronic illnesses are “invisible illnesses” – a condition that does not physically exhibit visible signs or symptoms.
One of these invisible illnesses is known as Ehlers-Danlos Syndrome (EDS). There are many types of EDS, but the most common forms are a group of connective tissue disorders that affect the body’s skin, joint mobility, and tissue fragility. Individuals who live with EDS experience pain and often treat their symptoms through medications, physical therapy and supportive care such as mobility aids. In many cases, these individuals find comfort through forearm crutches, wheelchairs and walkers.
The Ehlers-Danlos Syndrome community often identifies with “zebras”. This identity comes from an expression often heard in medicine: “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, when diagnosing patients, look for the more common and standard diagnosis – not the unusual. EDS is an unexpected diagnosis because it is rare.
Meet MaryAnn Butler
Mobility Designed was first introduced to the EDS community when we got a call from MaryAnn Butler in January. During our conversation with MaryAnn she revealed to us that she was diagnosed with EDS 5+ years ago. Since the diagnosis, she had searched for the right mobility product to give her freedom to live her life. Living with EDS has not been easy for MaryAnn as even the simplest activities can be painful.
MaryAnn dreaded getting out of the house and having to be on her feet all day, but when she found the M+D Crutch, she felt much different. Growing up, she had been exposed to traditional axillary crutches. But she knew she needed to find a product built for the 21st century.
“Since becoming a Registered Nurse in 1998, and working many years in Emergency and Occupational Health, I have given out countless sets of standard wooden crutches. I recall many years ago they were being billed out at $100 per pair. The functional upgrade of the M+D unit is several tiers above the long unchanged wooden model. The cost to value ratio of the M+D product is also quite excellent. As a disabled adult who has been looking for several years for such assistive devices, and as a former RN, these crutches are the pot of gold!”
The ease and comfort of the M+D Crutch created opportunities for MaryAnn that, just a year ago, she thought were impossible. She has finally been able to get out and comfortably go to the doctor to get new treatments. Just a couple weeks ago, she made a much-needed visit to her orthopedic office in Idaho Falls. Before finding the M+D Crutch, this was an outing she feared.
“The day trip would have been a great deal more problematic for me if I didn’t have the M+D Crutch. Getting in and out of the car, parking lots, rest stop use, navigating exam rooms, the x-ray process, all made easier and less physically taxing due to using the M+D Crutch. I generally don’t love things, just people. I LOVE MY MD CRUTCHES!”
Mobility Designed’s push to help the Ehlers-Danlos Society
Since learning more about MaryAnn’s story and conditions, Mobility Designed has rapidly gained popularity among the EDS community – mostly women. We are listening, learning, and growing to understand many of the challenges this community faces on a daily basis.
In July, we participated in the Ehlers-Danlos Society 2020 Virtual Summer Conference to engage with a society of people that we are honored to serve. This global event was a great way for our team to learn about the specific needs of individuals with EDS. We even participated in the vote for in the Zebras Got Talent event! Here are two of our favorite entries in the Zebras Got Talent event.
Mobility Designed’s mission is to create the opportunity of pain free mobility for all – including those in the EDS community. We designed the M+D Crutch and Combo Stix, not only as an innovative mobility aid, but as a lifestyle enhancer.
A community of people living with invisible illnesses has become visible. And we are here to help every step of the way.
“During the worst of times, take the opportunity to find the best in yourself. My Mobility Designed crutches help me do just that.” – MaryAnn Butler, M+D Crutch User with EDS