There are No Ehlers-Danlos Syndrome Specialists in Ireland
There are no EDS specialists in Ireland so Aimee needs to travel to London for assessment and treatment.
By AOIFE FINNERAN – The Irish Sun
AIMEE Foley would love nothing more than to start a family with her fiancé.
Aimee, 26, was diagnosed with EDS in May after six years of constant illness.
The incurable condition affects the skin, joints, muscles, blood vessels and organs — and, at its most severe, can be life-threatening.
However, there are no EDS specialists in Ireland, which means Aimee must travel to London for expert assessment and treatment.
And the stress of travelling has been made worse for Aimee, her mum Deirdre and the rest of her loved ones, by fears the HSE will not fund her treatment under its Treatment Abroad Scheme.
The Cork woman explained: “My last trip over to London was because I’m having persistent trouble with my stomach and swallowing. And I’m losing weight and not able to eat solid foods.
“The HSE sent back my application for funding and said they wouldn’t fund it because they deemed the trip to be for a second opinion.
“It wasn’t a second opinion because there’s NO specialist consultant dealing with EDS here.”
And because EDS is not a well-known condition in Ireland, Aimee also worries other patients will face a similar fight for treatment.
In a statement to the Irish Sun, the HSE said that if a treating consultant in Ireland identifies that an EDS patient needs a treatment which is not available here, the patient can make an application to the scheme.
Yet patients with EDS have reported constant refusals when it comes to accessing treatment in London.
After one refusal already, Aimee fears she will be forced to either do without the treatment or move over there.
And she may be forced to put plans for a family on hold.
She said: “I got engaged in October 2010 but the wedding isn’t a priority now. Steve and I want to start a family and I hope I’ll get well enough to carry a child for nine months.
“But if I go ahead and have a child then there’s a 50 per cent chance it could have EDS and then they’d face the same problems as me, trying to get treatment in London.
“I would have to bring my baby to England to be sure we could access treatment.
“We’ve had pre-conception counselling and I’ve been advised to get pregnant before I get too sick because I might reach a point where I won’t be able to carry a child.”
The distraught bride-to-be added: “I’ll either sit here and rot or I’ll have no choice but to move to the UK.
“In London they’re waiting to treat me and they know what needs to be done. They’ve said the only problem is getting our Government to pay for me to come back.”
In a bid to highlight the situation for other patients, Aimee is campaigning for a rare diseases clinic in Ireland so that people like her won’t have to rely on treatment in the UK.
She also wants the HSE to confirm that it will recognise the need for EDS patients to be treated in London.
The determined campaigner insisted: “I’m in and out of hospital all the time and have been for six years.
“Money is being paid for me to be in hospital here.
“If they have to keep funding this without proper treatment, why don’t they fork out the money for people to go to London and have whatever treatment is necessary?
“Then they can bring that information back and use it here. I feel like I’m swimming against the tide here and it’s so exhausting. Why is my country turning its back on me?
“I know I can’t be cured but surely I’m entitled to treatment. I’ve just got one life and surely I’m entitled to live it.”
It is very difficult to get the proper diagnosis and treatment when there are no knowledgeable doctors in Ireland.
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