Rowing is Still Claire’s Passion in Life, Despite Ehlers-Danlos Syndrome

Every day is a struggle for Claire, but the rewards from rowing make it all worthwhile.  

Written by LYDIA FALLON

“Out on the water is where Claire Connon feels most at home.

Rowing down the River Cam as the sun begins to rise; wind in her hair and a smile on her face, the 28-year-old feels truly alive. It’s where she is supposed to be. “It feels like the most natural place for me to be,” muses Claire when we meet at her Cambridge home. “People sometimes say that about a house, but for me it’s the water. It’s where I belong and what I should be doing – I just love it.”

Rowing is Claire’s life; she lives and breathes the sport, every day getting up at the crack of dawn to snatch just a few moments on the water – “my friends and family think I’m mad,” she laughs.

Mad? Maybe. Inspiring? Definitely. The fact Claire’s even in a boat at all is a miracle, considering just a few years ago it seemed like an improbable dream.

Diagnosed with a rare condition called Ehlers-Danlos syndrome when she was in her second year studying geography at Cambridge University, Claire now uses a wheelchair and has to take all her food through a tube. Every day is a struggle, but Claire was not prepared to give up the thing she loves most. “Even though I couldn’t walk or eat, the only thing I was really bothered about was the fact I couldn’t row,” says Claire. “My mum wanted to throw away some of my old rowing kit and I said no, I couldn’t come to terms with the fact I couldn’t row.

“I felt like if I gave those things up, it would be admitting that I wasn’t going back to rowing and that wasn’t something I was prepared to do.” And she didn’t.

In 2012 Claire started para-rowing and hasn’t looked back since. She now has her sights firmly set on following in the footsteps of her heroes and competing at the Rio Paralympics in 2016. “I sit and watch the Paralympics and think I want to be on that podium one of these days,” Claire smiles.

“I was at Eton Dorney in 2012 and it was amazing, but all I kept thinking was ‘I want to be in that boat’. It’s my ultimate ambition – I want to be the best, there’s no point in aiming for anything else really, is there?”

Claire was always an active child. Growing up she signed up to any sport she could; much preferring to be on the go than sit at home watching the TV like some of her friends. “I’ve always loved sport,” she says. “I had more after-school clubs on than there were days in the week at one point. Netball, rounders, badminton, diving – whatever sport they could offer.”

But it was rowing that really got her heart pumping. Claire first got involved in 2004 when she was asked to join the university boat club (“mainly because I was tall!”) and was instantly hooked. It looked like she was on the path to a promising career in the sport, but when she picked up a virus out of the blue, everything changed. “I can tell you the exact moment when it happened. I was walking down Mill Road and it literally felt like someone had pulled the plug on me. All my energy suddenly went and all I could think was ‘I need to get home right now’.”

Claire’s health started deteriorating at an alarming pace. She was determined to carry on as normal, but even performing the smallest of tasks was now proving to be the ultimate struggle. She was in complete turmoil. “I was so tired all the time and had a lot of joint pain,” Claire remembers, describing some of her symptoms. “It was a fatigue I’d never experienced before; it wasn’t like you’d just worked really hard, it was never-ending, almost like a climbing through treacle sensation.

“No matter how hard you tried, you still couldn’t get anywhere. I would fall asleep at my desk because even the gap between my desk and my bed was too much – I was so weak.

“I was forced to give up rowing and spent several months getting a lot worse. My knees kept buckling and I ended up on crutches and then eventually a wheelchair.”

Claire’s mobility wasn’t the only thing to suffer; she soon started developing severe problems with her gastric system too. “I was throwing up after every meal; I would even throw up my evening meal at breakfast the next morning,” says Claire. “It got to a point where I couldn’t really eat at all.”

Claire had expected her time at university to be one of the best experiences of her life, but, in fact, it was turning into a nightmare. How did she stay strong? “I’ve always tried to be positive person and sitting in bed moping all day isn’t going to change anything,” says Claire matter-of-factly.

“All I knew was that I wanted to finish my degree, so that’s all I focused on and I didn’t have time to freak out about being ill.

“The university wanted to give me an unclassified mark but I said no, I wanted to stay on and finish my degree, regardless of whatever classification I could get. I worked half an hour on and half an hour off through my exam period and pretty much survived them by living on Haribo and Lucozade. I just needed enough sugar to keep me awake. “

Doctors had initially diagnosed Claire with ME, but her symptoms didn’t seem to quite add up. “I had more and more symptoms that didn’t fit their diagnosis and after joining an ME charity for young people, we discovered there was a group of us who all had very similar symptoms,” Claire explains.

“After five years of misdiagnosis I persuaded my GP to send me to a doctor in London who specialised in a condition called Ehlers-Danlos syndrome (EDS), and he took one look at me and said ‘why has it taken so long for someone to work this out? It’s so obvious’.”

EDS is a rare genetic condition which affects the connective tissue in the body. Notoriously hard to diagnose; typical symptoms include stretchy skin, loose joints and extremely fragile body tissues, not to mention chronic and excruciating pain. Misdiagnosed and often misunderstood by the medical community, Claire believes she’s actually suffered from EDS since childhood. “I’d had problems with my joints since I was tiny and always had lots of strains and sprains. Doctors just assumed I had weak joints because of all the diving and gymnastics I did so nothing was ever really done about it, but I do remember one time being sent home from school because my knees had locked and I couldn’t walk, so it was always there lurking.”

After so long spent searching in vain for the correct diagnosis, Claire admits it was huge relief to finally be able to put a name to the condition. “It was like, I know you have just told me I have an incurable disease, but at least I know now and I was able to finally get the help I needed. I realised I wasn’t alone anymore.”

But she was still incredibly weak. Now a full-time wheelchair user and unable to keep anything she was eating down, every day was a struggle. “My eating was gradually getting worse and worse,” Claire remembers. “Because of the EDS my stomach became kind of floppy and didn’t have the ability to push any food through.”

Claire was becoming severely malnourished, and after trying several different nutrition methods, with varying results, in 2012 doctors decided that she needed to be fed intravenously, on Total Parenteral Nutrition (TPN). It proved the turning point. “I have a little hole here,” she says, tapping her heart. “And there’s a devise underneath my skin which I put a needle in and connect to a bag of fluid full of glucose, vitamins, minerals – basically everything I need to keep me alive each day.

“For 12 hours every night I attach the drip bag to the device, which then infuses with my blood.

“It is hard work and a complete pain but it was the best decision I ever made,” she smiles. “Right from the beginning the change in me was just fantastic; it was like I was a completely different person. My friends and family couldn’t believe it, they used to see my just sleeping and barely able to function, but after starting TPN I finally found the energy I had before I was ill.”

After discovering a local adaptive rowing club, Claire even felt well enough to return to the water. It proved to be a life-changing decision. ”I discovered I was actually quite good at it. In fact, I was a much better adaptive rower than I had ever been as an able-bodied rower!”

‘Quite good’ may be a slight understatement. Within six weeks of taking up the sport again, Claire entered her first para-rowing competition. It was a success, in fact, a huge success. “I won my first adaptive race in Wales,” she smiles proudly. “It was fantastic, I was so happy. I was absolutely knackered most of the time too but I loved being back.

“I realised rowing made me so much calmer and less stressed; you don’t have to worry about anything else – you are just there to row and can ignore the rest of the world.”

That first race in Wales was just the start. Over the last two years, Claire’s para-rowing career has gone from strength to strength. She now trains at least 10 times a week, lifts weights close to those required of the able-bodied GB athletes and now has her sights firmly set on the ultimate goal; to break new medical, scientific and sporting grounds by becoming the first intravenously-fed athlete to compete at a Paralympics. It’s awe-inspiring stuff.

In her darkest of hours, when rowing seemed a distant memory, could Claire ever have imagined she’d be back competing against the world’s best? “Never,” she laughs. “It’s like I’ve almost come full circle. I’ve been to hell but finally got back.

“When I was diagnosed I was completely written off, I was told I’d never make anything of myself, but one of my favourite quotes is ‘If they tell you what you want to do is impossible, they don’t know you’.

“If you don’t try, you will never succeed.”

:: Claire is currently fundraising to enable her to buy her own adaptive rowing boat and move a step closer to her Rio dream. To sponsor Claire, visit makeachamp.com/claireconnon.

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