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Samuel March avatar
Samuel March

The Grevy Train

Raising money and awareness for Ehlers-Danlos Support UK because we want to show love & support for Darcey

422 %
£6,339.93
raised of £1,500 target
by 179 supporters
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  • Team members: Eloise Appleby and Tai Bucks
  • Event: London to Brighton Challenge 2017, 27 May 2017 to 28 May 2017

Ehlers-Danlos Support UK

We educate, inform and raise awareness to support those living with Ehlers-Danlos

Charity Registration No. 1157027

Story

In 2014 I met one of the most important figures in my life: my ex-girlfriend Darcey...dramatic whirlwind romance ensued.

At the time she had recently been diagnosed with Ehlers-Danlos Syndrome, a rare and incurable condition that rapidly began to attack almost every area of her life. Her fight is relentless, crushing and often heartbreakingly hopeless, and our relationship was unfortunately one of its many casualties. My love, support and admiration - however - only strengthen watching her face new challenge after new challenge as her body puts her through a living hell.

On March 1st, Darcey posted a brutally honest description of her struggle on Facebook, and I was spurred to do something to show support, so I reached out to the most supportive people I know: my family. My aunt, a recent cancer survivor and no stranger to hard fights, suggested the 100km London to Brighton challenge, and my cousin Tai was quick to jump on board the Grévy* train.

* The Grévy is the largest and most endangered species of Zebra (Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras, so the zebra has become the spirit animal of the condition)

 I can't begin to describe the pain and suffering EDS inflicts on it's victims, so here's a few words on the subject, straight from the Zebra's mouth:

Yesterday was rare diseases day and in an effort to raise awareness I decided to tell a little bit about my diagnosis and how it affects me.

I was originally diagnosed with Ehlers Danlos Syndrome when I was 15, and recently that diagnosis was upgraded to the more severe form of the illness - Vascular EDS, as well as a neurological condition called Chiari Malformation.

When you hear a diagnosis like that, it really does take your breath away. Reading about the symptoms, in particular the high risk of death from heart problems, truly took some time to rationalise. The moment you get a diagnosis like this, you do go through grief. You mourn the loss of a life you dreamed you could have. You cry over the future being mapped out for you; a life of hospitals and IV drips and pain medication that leaves you almost zombified. And when you realise that it's a rare disease, you resent the lack of funding and research with every fibre of your being.

This is why it is so important to donate to rare disease charities. People like me view our diagnosis as a death sentence; as something that will be scrawled upon a coroner's report in a short space of time. This isn't simply due to the symptoms, but because there is no funding to research a cure. You lose the fight before it ever began because the sheer hopelessness overwhelms you. Hope is so integral to overcoming an illness such as this. 

In the moments my entire body is rigid and convulsing in seizures, when my joints are locking out of place and my muscles are screaming in protest for relief- those are the moments where hope is needed most. Unfortunately, the hope I once had in abundance trickles away the moment I feel the horrendous potency of muscle relaxants and painkillers drip my veins. Those drugs are a cold reminder of the research our illness lacks; they're a sombre veil placed over our symptoms in an attempt to mask what the true problem is. Physical pain ebbs away as the numbing concoctions flood my system, but the emotional turmoil merely increases. It's those moments that are the worst. It's a pure vulnerability I would not wish upon anyone - moments where I place my hope and faith in a doctor's hands and pray he can help me. Sometimes he can, sometimes he can't. Sometimes I'm forced to undergo a general anaesthetic- knowing I'll be unable to resist as he twists and pulls the joints back into place. Sometimes I'll wake up from the operation and scream in pain, forcing the joints out again. 

Sometimes I'll reach the end of my tether and shove something like my jaw back into place because I simply cannot stand it any longer. My mum will stand by helplessly watching as I writhe in agony and beg for relief. She'll be the one alerting doctors as I stop breathing, the one holding my hand as I cry and beg for something to give respite.

Illnesses like these are not just pain; they're a poison stripping your humanity and person away until you're a shell of a human. I wish I could lie and pretend I fight in every one of those moments- I wish I could act like the people you read in those inspiring gofundme stories. Instead, the truth is that I have given up more times than I can count.

It is only someone as incredible as my mother who pulls me through, or the doctors who stroke my hair as I weep, or the nurses who make me eat and coax me out of the darkness. It is my flatmates making me laugh and giving me flowers and holding me as we wait for the ambulance. It is regular people who keep me going - making me feel again and showing compassion, despite not seeing the physical symptoms. It's someone who reads and learns what this illness is like and silently understands my pain. Knowing there is someone that cares, truly cares, means the absolute world to me.

One of the worst feelings in the world is to go through this agony, only to hear a stranger utter the derisive words: 'well you don't look sick'. Rare illnesses are so often invisible, but that does not mean they are not there. Just because they don't have enormous campaigns and fundraising and celebrities supporting the cause doesn't mean they don't matter. Please take your time - even 5 minutes, to read about this illness and consider supporting these smaller charities. Though it may seem like your support is just a drop in the ocean, I assure you as someone who suffers from it, it truly means the world.

https://www.ehlers-danlos.org

Xx



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