By Charlotte Nisbet
A stunning woman who is being squashed by the weight of her own head is desperately fundraising to save her life.
Alison Turner, 32, from Bury, Manchester, has been told that the ligaments supporting her head are too weak to support her body – and unless her skull is fused to her spine, she risks sudden death or paralysis.
The former children and family support worker was diagnosed with Ehlers-Danlos Syndrome, a genetic condition that affects the connective tissue, in 2015.
And she risks a full neck dislocation as her neck and shoulders are unable to hold the weight of her skull.
With the help of her supportive partner, Nick Zabel, 33, she has set up a fundraising page in a desperate bid to save her life.
Alison is hoping to book a date for surgery in Barcelona as soon as the fundraising target is met.
But with every day being a battle for survival, time is running out and she still needs thousands to hit her target.
Alison, who is currently unable to work, said: “I go to bed most nights not knowing whether I’ll wake up the next day.
“It’s a terrifying illness but I try my best to keep positive and not worry about what could happen.
“I have to wear a neck brace as I have instability from my skull to the second vertebrae in my spine.
“I have forgotten what it’s like to live a normal life, be able to take care of myself.
“I am a million miles away from the independent, hardworking and fun woman I once was.
“Things have worsened recently too, after an MRI scan showed I have further problems in line with my EDS, I’m now at risk of having a full neck dislocation.
“If my arteries or brain stem were damaged during this, it could be fatal.
“I’m so thankful to everyone who has donated to my fundraiser so far.
“The generosity of friends, former work colleagues and people I have never even met, has been overwhelming.
“I know the operation won’t solve all my medical problems but it will prevent me from being paralysed and will take away the risk of death.”
Alison is hoping to undergo this major surgery at hospital Teknon in Barcelona but she is aware of the worrying complications.
Yet it’s a risk she’s willing to take as she’s unable to live with the debilitating symptoms any longer.
Her partner Nick said: “Over the past 18 months, Alison is a shadow of her former self due to unrelenting symptoms.
“Hideous headaches, frightful facial pain and fatigue has left Alison, at times, bed bound for days.
“Stroke-like symptoms and muscle wastage means that she is too weak to perform the simplest of daily tasks.
“Alison was diagnosed with type three EDS and it affects her connective tissue throughout her body this effects blood vessels, heart, gut, urinary systems, joints, muscles, ligaments and tendons.
“Alison is forced to wear a hard cervical collar for the majority of her day and various braces in order to steady her joints from dislocating.
“But despite it all, she still has her zest for life and is desperate to get her independence back.”
The funds are for the treatment and the after costs of her recovery.
Alison added: “After the operation it will be a lengthy recovery period and I will have very limited movement turning left and right for the rest of my life as the skull bones are being fixed to the neck.
“But it will save my life and hopefully allow me to lead more of a normal future that isn’t confined to a bed.
“EDS has robbed me of my passions and career however once I have the fusion surgery I can move forward in trying to build by body back up and getting a quality of life back.”