EDS Life
Ehlers-Danlos Syndrome (also known as EDS) is a connective tissue disorder that has 13 known subtypes. Typical symptoms include hypermobility, joint laxity, and chronic pain. I live with the hypermobility subtype, which manifests mostly in, as you might guess, hypermobility related symptoms. It also brings with it comorbities including Postural Orthostatic Tachycardia Syndrome (POTS). Like all rare diseases, everyone’s experience is different, not just limited to the symptoms we experience, but also our experiences in the medical field.
EDS-ers have adopted the zebra-print awareness ribbon to represent our community, based on the phrase used in medical schools “If you hear hoofbeats, things horses, not zebras”, which fails to take into account that sometimes it might be a zebra. It’s this phrase that contributes to delays in diagnosis, that can be years long.
Below, I have shared some of my own videos on my life with Ehlers-Danlos Syndrome, as well as some general resources to learn about the disorder. Nothing shared is meant to be used as a diagnostic tool or medical advice, except for content that talks about the diagnostic criteria (because uh… yeah.). I aim to keep on top of information shared as much as is reasonable.
I Have Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome is a connective tissue disorder that causes hypermobility, tissue fragility, and stretchy skin, among many other symptoms. There are 13 different types, each with their own set of symptoms. This video talks about Hypermobile Ehlers-Danlos Syndrome, its effect on my life, and how I deal with it day to day.
My Disability Outreach Story
My career has been affected by Ehlers-Danlos Syndrome, and my other disabilities. In this video I share how EDS has impacted my journey in STEM, and how it has challenged me to turn the pain into something positive, hopefully inspiring the next generation of disabled scientists to “do it anyway”.
Life With A Rare Disease
In the UK, a rare disease is classified as a disease that affects 1 in 2000 people. With Ehlers-Danlos Syndrome being one of a few rare diseases I live with. Rarity itself causes many problems, and build a community in its own special way. Calculations in the video based on 2022 population data.
Dismissive Doctors Are Dangerous
An opinionated video, based on my experiences being misdiagnosed with fibromyalgia, anxiety, and growing pains, by doctors who dismissed my concerns. I talk about the difficulties I faced that could have been avoided if the proper tests had been done. However, I didn’t know the full extent until years after this video was filmed.
Useful Websites
The Ehlers-Danlos Society
The Ehlers-Danlos Society is the most well known charity supporting people with EDS, and healthcare professionals looking to treat and diagnose it. They share study information, the diagnostic criteria, research, and information about Ehlers-Danlos Syndrome.
Ehlers-Danlos Support UK
A useful resource for people living with EDS in the United Kingdome. It contains resources for patients and healthcare professionals tailored to the UK healthcare system. It also shares news, research, links to support groups, and fundraising opportunities.
A Review Of Ehlers-Danlos Syndrome
A recent review article on the symptoms and current treatments of Ehlers-Danlos Syndrome, including case studies, and genomic data. More in-depth accounts of each subtype. Journal of the American Academy of Physician Assistants
Max Fisher RSci 