Katie – “When I reached 16 I Had Dislocated My Hips about 50 Times from EDS”

Katie Vale has finally discovered some methods to help her manage her Ehlers-Danlos Syndrome symptoms. 

By: Lucy Benyon 

Katie Vale was diagnosed with Ehlers Danlos disease which causes regular injuries
“Katie Vale was diagnosed with Ehlers- Danlos disease which causes regular injuries [PH]
Katie, 34, lives in Essex in the UK. Eleven years ago she was diagnosed with Ehlers-Danlos syndrome, a condition that causes her regular injuries, even in her sleep. She says:“By the time I reached my seventh birthday, I had already broken my arm three times. I seemed to be forever falling over and hurting myself and I was always covered in bruises. Everyone just assumed I was clumsy. But, just like my mother and sister, I was hypermobile – or double-jointed as we called it back then – and I used to show off by doing the splits or bending my hand behind my elbow. Being flexible felt like a gift and it was my dream to be a dancer one day.Then at senior school I began to feel a lot of pain in my joints, especially in my hips and shoulder blades. I had to take paracetamol two or three times a day to deal with the discomfort and I began to get regular injuries. When I was 14 I dislocated my right hip just walking down the garden path. Another time I dislocated my left ankle on the trampoline at school and had to be rushed to hospital.

By the time I reached 16 I had dislocated my hips about 50 times, but my GP thought all the problems were caused by my dance classes.

“You need to stop,” he told me. “Otherwise you’ll be in a wheelchair before you’re 40.”

My parents got me referred to a physiotherapist for a second opinion. She said I could still dance but my hips were so fragile that I should no longer walk up or downstairs. I had to have all my lessons on the ground floor at school, and at night my dad had to carry me up to my bedroom. I knew there was something seriously wrong with me, but I was worried that people would think I was a hypochondriac so I just soldiered on, all the way  through school and university too.

After I graduated I got a bar job in Spain, which I loved, but one morning I woke up to find my right knee was so swollen that I couldn’t move. I was taken to hospital, where a doctor explained that somehow I had dislocated the joint in my sleep.

This was an injury I couldn’t explain away and I knew I finally had to find out what was wrong. Back in the UK I saw a rheumatologist who gave me a thorough assessment before diagnosing Ehlers-Danlos syndrome hypermobility type (EDS-HM).

He explained that Ehlers-Danlos is a genetic condition caused by defective collagen in the body, resulting in loose and unstable joints. There is no cure and people with the hypermobility type are prone to regular dislocations and breakages as well as pain and fatigue. There was a chance, he added, that I would end up in a wheelchair.

I didn’t know whether to cry or smile. I was only 22 and I knew my life would never be the same again, but at least I now had a diagnosis.

health, diagnosis, real life story, Ehlers-Danlos syndrome, injuries, diseaseKatie Vale accepted that she has got a rare disease and she learnt to live with it [PH]
I realised then that I finally had to give up dancing, but turning my back on my dreams made me depressed and angry and my condition actually deteriorated. My shoulders would fall out of their sockets as I was lying in the bath. I was in constant pain and just turning over in my sleep could leave me with a dislocated knee or ankle. It was only in 2005 when I set up my millinery business – katievale designs.com – that my life seemed to regain its purpose. I’d been looking for a creative outlet and started making hats for my family and friends. I loved it so much that I enrolled on a couple of professional courses and then built up a thriving business.As I reached my thirties, I began to accept that I had EDS-HM and I learnt how to pace myself. I knew how important it is to exercise and to keep my body active, so I started working with a personal trainer and a private physiotherapist.Now I’m feeling fit and healthy and, for the first time in years, I don’t need painkillers. It’s all about being sensible – if I’m going shopping I park as close as I can and I always carry two half-empty baskets rather than one full one. I still have unexpected injuries – at least twice a week I wake up with a dislocated shoulder or ankle – but that’s something I’ve learned to live with.Now I just want to enjoy everything that life has to offer, and although I’m single at the moment I haven’t discounted the possibility of having a baby. If I have children, they have a 50 per cent chance of inheriting my condition, although they might not experience any of the symptoms.

For now though, I want to raise awareness of my illness. I know so many people like me who have been fobbed off by doctors or even accused of inventing their symptoms. Early intervention is so important to prevent disability and irreparable damage, which is why I’m supporting the Hypermobility Syndromes Association’s GP education programme, which is specifically targeted at children.

When I was first diagnosed I felt hopeless but now I feel in control of my illness. I know I will be happy and fulfilled no matter what the future holds.”

Contact the Hypermobility Syndromes Association on 0845 345 4465 or hypermobility.org.

What is EDS-HM?

  • Ehlers-Danlos syndrome hypermobility type (EDS-HM) is a genetic condition that affects the body’s use of collagen – the building block found in ligaments, cartilage, skin, bone,

  • blood vessels and the spine.

  • One in 5,000 people in the UK has a form of Ehlers-Danlos syndrome. EDS-HM is the most common and considered the least severe type of the illness. There is no specific test to diagnose it.

  • People with EDS-HM may often dislocate their joints and they have problems with their ligaments, tendons and soft tissues, too. Pain and fatigue are common symptoms.

  • There is no cure for EDS-HM but those with the condition can control the pain with regular painkillers. However, the HMSA advises using a combination of exercise and physiotherapy to build core strength and endurance.

  • EDS-HM is not life-limiting and the majority of people with the condition can live a normal life. They may be advised to avoid contact sports and to maintain a healthy weight.”

Katie has now found a promising direction for her life and enjoying it in spite of her recurring issues with Ehlers-Danlos Syndrome.

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