EDS, an Invisible Illness that Hides the Pain and Heartache
” Jodie Vasquez is calm, poised and beautiful. Her flawless skin and tallframe sparks envy among her peers – yet the 18-year-old would happily give it all up.
Jodie’s ethereal features are a common ‘side effect’ of Ehlers Danlos Syndrome (EDS), an ‘invisible illness’ of various types. Jodie has been diagnosed with type 3 hypermobility, and her dainty features conceal internal organs that are failing one by one.
“Sometimes I wish people could see the pain in my tummy,” says Jodie, “so they know how bad it is. The worst thing people say is ‘But you look okay’ – I hate that.”
Her mum, Maxine Farish, added: “People don’t see Jodie in the middle of the night, in pain and crying; they just have glimpses of this beautiful young girl.”
The two sit side-by-side in Jodie’s room at their home in Currock, Carlisle, reluctantly preparing to talk about her illness. Neither likes the attention, but are aware it is a necessary evil to publicise their charitable venture, Jodie’s Journey.
Jodie was diagnosed with the life-threatening illness EDS only three years ago. Since then she has had to endure her small intestine slowly failing, the removal of her appendix and the removal of her large bowel – to be replaced with a permanent stoma or ileostomy.
The latest blow for the would-be beauty therapist was that her bladder is no longer functioning properly. Jodie is to have surgery to fit a second stoma, which will empty her bladder for her.
The pair throw medical jargon, operations and the names of invasive procedures around as if they are commonplace. For this family they are.
After months of ‘growing pains’, it was only an admission to Newcastle’s Royal Victoria Infirmary in January 2009 which finally led to answers.
As Jodie’s stomach and intestines began failing, she was subjected to rigorous tests and numerous operations. A diagnosis of EDS was given almost a year later, after months in hospital.
Both mother and daughter were grateful for the news, despite the knowledge of this terrible illness.
“I was pleased they knew what was wrong, that I wasn’t a mad case,” Jodie laughs. “I did think ‘Why can’t you fix it?’, because they were all doctors.”
There is no self-pity though; Jodie’s twin sister Emma does not have EDS, and she clings to this.
“I wish I didn’t have it,” she admits, “but I’m glad it’s me and not Emma. It’s hard to watch her doing what I should be doing, but I wouldn’t want her to go through this. I like to see her living life to the full.”
The family have focused on “keeping it real” and after each setback they pick themselves up and carry on. Jodie was forced to give up school – she had been at Trinity – and was home-schooled.
She wants to be a beauty therapist, and was registered to begin a part-time course at Carlisle College last September. Unfortunately, the news of more surgery meant she delayed it until this year, but, again, her impending bladder surgery has put paid to studying. “I’ll get there,” Jodie says without a hint of frustration.
Life is not easy for anyone in her family, and Jodie admits she has dark days
For Maxine it is especially hard because she has given up work to become her daughter’s full-time carer.
But perhaps the toughest part comes with Jodie’s feeding regime. Unable to stomach food – it causes her excruciating pain and she is frequently sick – and with her body rejecting all other forms of feeding, Jodie survives thanks to Total Parenteral Nutrition (TPN).
Every night she is hooked to a drip for 12 hours, which feeds a solution into a central line above her heart.
This is perhaps the biggest challenge for mother and daughter, as it is Maxine who must attach it – and one wrong move could prove fatal.
“It comes with severe complications, the risk of infection, septicaemia or liver failure,” she says. “Everything must be completely sterile, every time. TPN isn’t great, but it is her lifeline and she is thriving on it.”
Jodie adds: “I don’t want Mum to have that risk; she shouldn’t have to, knowing what she’s doing could be fatal.”
About once a month she spends a night at Eden House Hospice, providing respite for everyone.
Jodie loves these trips – where everyone else also has their own difficulties, and she can swim without fear of stares. Each trip sees her bringing home a new handmade gift for Maxine. “I’ve got a keepsake box of all things she’s made; they’re even more important to me now,” her mum admits.
The strength of the family is endless, as Jodie has devoted her free time to raising awareness of EDS and fundraising. In 2010 she agreed to be the Royal British Legion’s Poppy Princess, supporting the poppy appeal.
Jodie’s stepdad, Steve Farish, is ex-Army, and eligible for support from the legion. It has helped pay for building work to allow Jodie to live at home and helped give her a holiday in Florida, together with the National Holiday Fund for Sick and Disabled Children.
“It was about trying to give back,” Jodie said. “I felt really proud to do it for them and to help others.”
Their latest endeavour, Jodie’s Journey, is for the Sick Children’s Trust, which provides accommodation for families of children in hospital. It was through them that Maxine was able to stay with Jodie for months, in Newcastle and then London.
A cake sale raised more than £400, and a recent ‘mile of coins’ appeal in The Lanes shopping centre, Carlisle, brought in £815.
Jodie’s future is uncertain. She is eligible for a five-organ transplant, but would still need her TPN tube and with just a five per cent chance of survival, it is a risk she is unwilling to take.
For now, mother and daughter continue to fund raise and live each day as it comes with the help of friends and family.
“We could not have done this without the support we have received,” Maxine insists. “They have helped us carry on, from supporting Emma to helping fund raise.”
“We can never thank them.”
Jodie was subjected to rigorous tests and numerous operations before getting her diagnosis. Ehlers- Danlos Syndrome (EDS) is an ‘invisible illness’ and sometimes she wishes others could see her pain. She counts her blessings and focuses on giving back through EDS awareness.
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