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<div>Hey everyone ️
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<div>I’m reaching out to all you wonderful people as I want to share something deeply personal. Some of you have seen my health deteriorate in recent years. I want to turn this into something positive. Aimee and I are going to Europe biking this year, travelling about 2500 miles from the UK through Netherlands, Germany, Austria, Slovenia and Italy. It is most likely given my current condition this will be the last time I will be able to take on a trip like this. I know it's going to be difficult and so I want to use this event to raise awareness and funds for a condition I live with every single day: Ehlers-Danlos Syndrome (EDS).
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<div>NOTE: The full trip is paid for by us and all funds go directly to the charity.
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<div>EDS is a connective tissue disorder, which basically means the “glue” that holds my body together doesn’t work properly. I have Hypermobility Ehlers-Danlos Syndrome - so yes, I’ve always been “bendy”… but it’s so much more than that.
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<div>As a kid, I was flexible and didn’t think much of it. Looking back, the signs were always there. I had to have my jaw stretched with braces because of a narrow palate (a classic EDS sign), I suffered from constant headaches, and I even snapped a muscle in my neck at just 6 years old after slipping downstairs - my head twisted in a way that could have got me a part in The Exorcist!
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<div>As I’ve gotten older, it’s taken a serious toll.
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<div>My joints wear out faster and move in ways they shouldn’t, which has led to multiple surgeries - three on my feet alone because the joints shifted so much it became painful to walk, and surgery on my shoulder too. I’ve had steroid injections in my feet, knee, spine, hand, shoulder and even my bicep tendon just to manage the pain.
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<div>But it’s not just joints. EDS affects my whole body. I get painful cramping sensations between my ribs, gynaecological issues, ongoing stomach and digestive issues, I bruise like a peach, and my body struggles to heal properly. I’m short-sighted, I deal with vertigo at times, anxiety is very real, and I seem to be allergic to just about everything. I’ve even got the “classic” quirks - long arms and legs (great for hugs though!), big feet, and those oddly lovely little heel papules.
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<div>Then there’s my spine...
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<div>I have degenerative disc disease, with two ruptured discs in my lower back that are starting to compress my spinal cord and nerve. Sometimes my left leg just gives way. The pain is the worst I’ve ever experienced. Right now, I’m in a stage of pain management - this isn’t something that gets better. It’s something I have to manage… until the likely reality of major spinal surgery, replacing multiple discs. If things progress, I could lose the ability to walk, and even control basic functions like my bladder and bowels.
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<div>That’s my reality. Yes - it’s terrifying.
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<div>Day to day life is a challenge in ways most people don’t see. Standing too long hurts. Sitting too long hurts. Lying down too long hurts. Bending over to pick something up, leaning over the sink to brush my teeth, even towel drying my hair - all things I used to take for granted can be difficult or sometimes impossible. I try to "get on with it" but even that is exhausting.
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<div>If you’ve seen photos of me lying on the ground or somewhere random, that’s not me being dramatic. That’s me needing to stop because my body physically can’t keep going.
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<div>On my “good days” I feel almost normal and I probably do too much, because I want to live my life. Then I pay for it after. It’s a constant cycle of trying to find balance.
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<div>The hardest part though? <strong>Awareness</strong>.
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<div>So many healthcare professionals still don’t fully understand EDS. Like many others, I’ve only been able to access proper treatment through private healthcare, a benefit from my employer Arnold Clark that I am incredibly greatful for. The NHS doesn’t currently have a joined-up approach for EDS, which makes getting the right care incredibly difficult. There are positive steps happening - new assessment criteria and better training for healthcare providers are coming with the support of EDS UK, and a recent debate in Parliament has given hope but there’s still a long way to go.
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<div>That’s why I want to do something about it.
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<div>We are going to raise money and increase awareness for Ehlers-Danlos Support UK whilst riding across Europe on potentially my last "big tour".
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<div>I want people to understand that EDS isn’t just “being bendy” - it’s complex, painful, and life-changing
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<div>I’d love your support - whether that’s donating, sharing, or getting involved in a fundraising event. Even coming with us to Europe! Every bit of support is appreciated.
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<div>I’m still me - adventurous, stubborn, and determined not to let this slow me down. Life is for living, and I’ll keep fighting every step (or wobble) of the way.
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<div>If you can support in any way, it would mean the world to me
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<div>We will ride, raise awareness, and make a difference together ️
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<div>#EhlersDanlosSyndrome #EDSawareness #RideForACause #GLWR #GlasgowLadiesWhoRide #GlasgowLadiesEU26
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My Journey with EDS – Turning Pain into Purpose

bryan cox

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bryan cox

bryan cox

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My Journey with EDS – Turning Pain into Purpose

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