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Raising awareness for Ehlers Danlos Syndrome (EDS) and Hypermobile Spectrum Disorder (HSD) this month

Sweeney Miller is raising awareness of Ehlers Danlos Syndrome (EDS) and Hypermobile Spectrum Disorder (HSD) this May as part of the official Awareness Month.

EDS is a connective tissue disorder, most commonly associated with hypermobile joints which can cause recurring and frequent dislocations. The syndrome affects the collagen in your body and can result in a vast array of symptoms. Collagen makes up 30% of our total protein content which makes up our skin, cartilage, bones, joints, and organs. Due to this, those with EDS can present with a variety of symptoms that tend to be treated individually. In reality, this should be treated as a collection of symptoms that points towards an EDS diagnosis. Because of this EDS is considered a rare disease where in reality it is just vastly underdiagnosed.

Our Admin Assistant, Chloe-Lynne Slater has recently been diagnosed with the condition and has shared her story.

Chloe-Lynne’s story  

I am aiming to raise awareness of the condition throughout may as I have Ehlers Danlos Syndrome (Type 3, Hypermobile EDS). For me, EDS presents a variety of symptoms that drastically affect my day-to-day life. I first began to present symptoms in my teenage years as most people do but in the past few years, my condition has become less manageable and reduced my daily activity a lot. The symptom that affects me most is loose joints which result in recurrent dislocations and daily subluxing (a partial dislocation). This leads to musculoskeletal pain and chronic fatigue.

Within the last year, I have had many appointments and new symptoms which have impacted my life and my abilities drastically and will continue to do so. However, I have a brilliant support system in my Partner and am receiving the medical attention I need which I am so thankful for.

Due to the nature of the disease, various other disorders tend to be diagnosed alongside EDS, as is the case with myself. I suffer from Postural Orthostatic Tachycardia Syndrome (PoTS) which can lead to my fainting upon standing from a seated position or standing for an extended period. As you can imagine this, alongside joint instability, leads to a lot of mobility issues and a lot of injuries.

Thankfully I am being seen by various specialists currently who are helping me to understand my condition and how to manage it with medication and various techniques to try and counteract some of my symptoms and I am greatly thankful for their care.

Charity support

I am also grateful for the information provided by charities such as Ehlers Danlos Support UK and The Ehlers Danlos Society (who I am currently raising funds for). Thanks to their work, myself and others can access information on our condition that very few medical professionals can provide us with. They also provide information to Medical professionals to help them better understand EDS and how to diagnose a patient.

The Zebra Mascot for EDS comes from a saying taught to medical students for many years. “When you hear hoofbeats behind you, don’t expect a zebra.” In other words, look for the most common diagnosis for an individual symptom rather than looking for an unusual diagnosis that accounts for the collective symptoms. People with rare and chronic illnesses spend years looking for answers and are told over and over “The tests came back normal” “That is too rare” “I have never heard of that”. No two people with the same diagnosis are going to present the exact same symptoms and we must learn to expect the unexpected.

Without information and charities like these, I may have never been able to connect all of my symptoms and been treated for them individually which could have worsened my condition in the long run. Some forms of EDS can be diagnosed with a blood test which can help greatly when trying to obtain a diagnosis. Others, such as hypermobile Type 3, cannot and are instead diagnosed by a system called the Brighton Diagnostic Criteria.

What can you do to help?

While I want to raise awareness around EDS specifically as this is the diagnosis that affects me, I would also like to raise awareness around the ways businesses and individuals can make accommodations for the needs of disabled people and make their businesses more accessible for their clients and workers alike. For example, when Covid began in 2020 many businesses and schools began to make it possible for individuals to work or learn remotely. They made services, where possible, accessible remotely. I and many other people with disabilities are passionate to make sure this is something that continues even when it does not affect the majority of the population. Remote work is something the disabled community has been trying to work towards for a long time. Now that it has been proven possible, I hope companies recognise how helpful this has been and continue remote access to work for those who can’t as easily get to an office every day.

I encourage everyone who reads this to take a moment to read up on not just EDS but any illness or disability which affects someone you know to better understand what they are going through. Having a chronic illness can be very lonely and isolating but it helps tremendously when someone takes the time to look up your condition and offer a kind work or ask how they can help. I think this is the most important reason we should be raising awareness. Research and treatments are of course very important and massively improve people’s quality of life. However, a supportive and knowledgeable social group is what makes me feel hopeful, even on my worst days.

Chloe-Lynne is also raising money for The Ehlers Danlos Society through her Just Giving page: https://www.justgiving.com/fundraising/chloe-lynne23

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