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'Help me get life-saving op' - Tilford woman in desperate plea for help

Tilford Laura Sylvester EDS

Published by the Eagle Radio News Team at 6:00am 17th December 2015.

A Tilford woman makes a desperate appeal for your help to get a life-saving operation.

23-year-old Laura Sylvester has a condition called Ehlers Danlos Syndrome (EDS) which causes the connective tissue throughout her body to be very weak.

In her case, her neck muscles have almost completely wasted away and are very unstable.

It has led to compression on her brain stem and doctors say that could kill her at any moment.

Laura can have an operation in America but she needs to raise £75,000 and is appealing for help.

In an emotional interview, she tells Eagle what it is like living with the constant fear that comes with her diagnosis: "When I get up in the morning and I see myself in the mirror with a neck brace, it is really hard.

"It is hard to accept and to see the fact that there is something wrong with me, and that actually this is going to change my life and I could actually lose my life at any moment right now and stop breathing.

Laura with her mum and twin sister

Tilford Laura Sylvester EDS

"I still haven't properly grasped it, or digested the seriousness of it. I'm trying to be as positive as possible to get me through this.

"I'm just thinking that way because I can't think about losing my life, or I wouldn't be able to get out of bed in the morning."

Laura says she has always had symptoms of EDS but was only diagnosed in 2014, something she describes as being 'a relief'.

Extremely sporty as a youngster, she began to get muscle injuries regularly in her teens.

It was not until she started a Masters degree that things went really wrong and she had to move home to be cared for by her parents.

She says it is a constant battle with the pain: "Living a daily life is difficult but I have my parents and my twin sister looking after me.

"On a daily basis I'm in chronic pain throughout my body the whole time, but especially acute pain in my neck which has been there for the past eight months.

"It is really difficult mentally."

Laura and best friend Jess

Tilford Laura Sylvester EDS

The surgery in America comes at more than just a financial cost for Laura and her family.

It will create stability in her neck, but she will lose all movement in her neck and head as a result.

That means big life changes, but Laura tells Eagle it is a price worth paying: "The surgery itself will not cure EDS, what it will do is provide stability in my neck.

"I'm sad that it won't cure the EDS but it will help me manage living with EDS."

Laura has started the campaign to raise funds for two reasons, so that she can have the life-saving surgery, but also to raise awareness about the often mis-diagnosed EDS.

Jess Cone is her best friend: "I've always known Laura is an extra special person, the most loving, kindest person who works so hard.

"It's amazing that someone can get a diagnosis, pretty much the worst you can get, and get up day-in day-out and be positive."

Laura and twin sister Rochelle

Tilford Laura Sylvester EDS

Twin sister Rochelle agrees that her sister is an inspiration: "I think she's going to be a huge role model for people who are suffering.

"I think she is very brave for going so public with this because there's no doubt we have had lots of people coming to us saying that a family friend or someone else has EDS.

"We're gradually realising that there are more people out there."

Laura's operation is booked in for January 13th 2016 in Washington DC.

The cost of the medical expenses, travel and recovery is at least £75,000.

You can help Laura by visiting her fundraising page.

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