Fall­ing apart!

I’m find­ing fes­tive fun de­spite my rare con­di­tion

Chat - - Chat come on in! - By Re­becca Hampsell, 41, from Ply­mouth

Since I was lit­tle, I’d al­ways been ex­tremely flex­i­ble

As a child, I found my calling as a gifted and promising gym­nast.

Said to be dou­ble-jointed, I could put my legs over my head and do the splits with ease.

My in­struc­tors were al­ways so im­pressed.

Un­for­tu­nately, the flip side was that I was con­stantly dis­lo­cat­ing my joints, end­ing up cov­ered in bruises.

My shoul­ders seemed to pop out of their sock­ets sev­eral times a week, and I was plagued by fre­quent in­juries.

‘You need to be care­ful, love,’ Mum fret­ted.

But it wasn’t just dur­ing gym­nas­tics, though.

It seemed the tini­est knock or jolt would leave one of my joints dis­lo­cated.

And that wasn’t all. I had chronic back prob­lems and tummy pains, and picked up ev­ery bug that was go­ing around.

‘A sickly child,’ peo­ple called me. They weren’t wrong. Aged 12, I was hav­ing so much trou­ble with my joints dis­lo­cat­ing that I had to give up my beloved gym­nas­tics.

Doc­tors couldn’t di­ag­nose me, though.

I was just seen as un­lucky, clumsy maybe – or worse, a drama queen, some­one who liked the at­ten­tion be­ing ill gave me. But I hated it. As I pro­gressed through my teens and started work­ing in a bank, my aches and pains got worse.

Some days, I was in so much pain, I couldn’t walk or even get out of bed.

I bat­tled on as best I could.

Then, in 1998, aged 21, I met Adrian. I warned him about my health prob­lems, but it didn’t put him off. ‘I’m here for you,’ he said. De­spite my health still be­ing up and down, two years later we had a daugh­ter, Lil­lie. The labour was bru­tal. Lil­lie had to be de­liv­ered by emer­gency Cae­sarean, as she couldn’t get through the birth canal.

It was the same two years later when I was car­ry­ing our sec­ond daugh­ter Maizie.

I hoped, now I was a mum, some­how my health prob­lems would set­tle down, al­low me to con­cen­trate on my kids.

But, if any­thing, my prob­lems grew worse.

My shoul­ders and knees con­stantly dis­lo­cated, and I had to have count­less op­er­a­tions.

I even needed an op­er­a­tion on my feet as they’d started to splay out­wards like a duck.

‘Why does this keep hap­pen­ing to me?’ I wept to Adrian. It was so un­fair.

Then, in 2006, I was ad­mit­ted to hos­pi­tal af­ter a mass was found in my ab­domen. I was in agony, and couldn’t even eat.

Her­nias, tu­mours, cysts – the doc­tors came up with all kinds of the­o­ries. But it was only af­ter an ul­tra­sound scan that the cause was found.

‘Your right kid­ney has de­tached and found its way to your ab­domen,’ re­vealed the chief sono­g­ra­pher.

‘What?’ I asked, hor­ri­fied.

How was that even pos­si­ble?

I saw a spe­cial­ist sur­geon, and un­der­went an emer­gency op­er­a­tion to pin my kid­ney to just be­low my ribcage.

Af­ter, the sur­geon re­ferred me to a ge­neti­cist.

‘Your kid­ney is un­usu­ally stretchy,’ he ex­plained.

The ge­neti­cist took no time in di­ag­nos­ing me.

‘You have all the symp­toms of Eh­lers-dan­los syn­drome,’ he re­vealed.

I’d never heard of it, but now I dis­cov­ered it was a rare ge­netic dis­or­der that af­fects con­nec­tive tis­sue.

As a re­sult, my body was too loose, too stretchy. ‘That ex­plains it,’ I gasped. It was why peo­ple said I was dou­ble-jointed – and why my joints dis­lo­cated so eas­ily and so of­ten.

Even as I was warned EDS was pro­gres­sive and would get worse, I felt re­lieved. At last I had proof I wasn’t ‘clumsy’

I was seen as clumsy, un­lucky, a drama queen

or ‘melo­dra­matic’. I had an ill­ness. Sadly, I soon re­alised, my girls did, too.

They were of­ten un­well and had hy­per­mo­bil­ity.

Sure enough, tests re­vealed that, like me, they had EDS.

Af­ter I got my di­ag­no­sis, I re­trained as a teacher, but had to med­i­cally re­tire af­ter a nasty fall at school left me with a dis­lo­cated shoul­der that never went back in.

Many more have fol­lowed.

In the past 20 years, I’ve had 26 op­er­a­tions and count­ing.

Last Oc­to­ber, I needed to have surgery to fuse my left shoul­der per­ma­nently into its joint, and had to wear a half-body cast for four months.

It means I’ll never be able to move my left arm prop­erly again, but it was the right call.

My mum Jane, 71, be­came my carer, and Adrian, 47, Lil­lie, 16, and Maizie, 14, all help where they can.

De­ter­mined to stay cheer­ful, when Christ­mas came round, I had a spe­cial, fes­tive cast made, bril­liant-red com­plete with red rib­bons, white trim and a black belt – just like Santa Claus!

‘Why should the kids have all the fun?’ I joked.

I wanted my girls to know that, de­spite all the prob­lems our EDS causes, there is still joy in life.

My con­di­tion doesn’t de­fine me, and it won’t de­fine my girls ei­ther.

In the past 20 years, I’ve had 26 ops and count­ing

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