“Turning heartache into hope with EDS UK”

My name is Millie and I’m an Area Co-ordinator for Ehlers Danlos Support UK within the Surrey and Sussex region. Like many, my EDS journey is overcome with grief, pain and great sadness, all of which has given me the drive to help others throughout their own journeys.

 

My life used to look very different, I spent years training full-time at two of the most prestigious dance colleges in the country, somehow able to push through the endless symptoms that I blamed on the physical demands of my training. It wasn’t until I woke up in the resuscitation area of A&E following a ballet class that I realised something was really wrong. I desperately tried to continue my training, enjoying every single second whilst terrified that it could be my last. But after dozens of hospital admissions far away from my family and major operations leaving me lifeless in intensive care for weeks, my hopes and dreams shattered right in front of me.

 

After years of feeling uniquely broken in every way of the word, I was diagnosed with EDS and it all made sense; the years of suffering from relentless symptoms that never seemed to add up, along with dozens of hospital admissions due to medical complications. I never thought being told I had a uncurable illness could bring such relief, but that’s exactly what it did.

 

My diagnosis opened up a whole new world full of answers I didn’t even know I was looking for, along with co-morbidity diagnosis’ such as PoTS, gastroparesis and intestinal dysfunction. Due to this, I rely on multiple medical tubes to administer artificial nutrition as well as medication in order to stay alive; a surgical jejunostomy tube, a nasal-gastric tube and central lines when necessary.

 

So life’s pretty different now, my days are mostly spent going from one hospital appointment to another, mostly in pain, suffering and living life one day at a time. But instead of pushing through the pain and longing for that “magic wand” to make everything better, I make the most of the days I am able to be a part of the world instead of watching it though a hospital window. Spending months and months in hospital has made me be able to truly appreciate the days when I am able to go outside, dance to my heart’s content and spend time with the people I love.

 

Stumbling across EDS UK was one of the biggest turning points throughout my journey, my heartache turned into hope and I finally found my place in a world I never thought I’d fit in to. So after a long gruelling battle between grief and acceptance – I came to terms with the harsh realities of living with multiple chronic illnesses and subsequently became fixated on the idea of helping others.

 

In Summer 2022, I began my role with the charity and never looked back. I hold regular support groups with the goal to create a safe space for people to open up about the harsh realities of EDS, inspire friendships, give hope to those along their journey and ultimately support people through the highs, lows and all the in-between. I also organise seasonal socials , offer support/advice as a fellow EDS’er, get involved with charity projects and help sufferers navigate the healthcare system in order to get the support they so desperately need.

 

I owe so much to Ehlers-Danlos Support UK; from the knowledge they have given me which has enabled me to get the right support as well as support others, to the wonderfully inspirational people I have met who’ve given me strength on the darkest days.

 

So if you find yourself or a loved one struggling with the effects of EDS, please get in contact with us… because“nobody should be left to fight on their own”– EDS UK.

Article written for Ehlers-Danlos Support UK