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.

Ireland“Yet her battle with Ehlers-Danlos Syndrome and ongoing fight for treatment means she cannot yet fulfil her dream of becoming a mum.

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. 

TO support Aimee Foley’s EDS campaign, visit facebook.com

Click here for the original source of this article.

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  • carrie heath

    Aimee you are not alone! Check out the Ehlers Danlos Syndrome Awareness Page on Facebook http://www.facebook.com/edsawareness1
    – many of us, at varying levels of intensity, belong to this page and can offer you the emotional support and understanding that I know you need. Such an un-talked about disease, but so devastating. You may find some help and clues in how to deal with EDS and still have a healthy pregnancy. I have 3 kids; 1 has EDS, 1 does not, and 1 is a genetic carrier. Don’t let it rule your life, but embrace it and continue to educate those around you.

    Hugs from the USA
    Carrie

  • Lesa Isa-Zebra

    I have vascular type Ehlers Danlos the killer of the EDS I dislocate joints up to and over 100 times a day. I live in the United States in a large city and have many specialist that are EDS field doctors. I can not eat as I throw up within twenty minutes of doing so. There is no treatment that i can see that would require going to another country. YOu brace the joints, You take an anti nausia med. to prevent gastroperisis the vomiting. You seek therapy to keep muscles strong. There should be some way that your doctors there can communicate with other docors the only treatment is treating the symptoms and that is done with common medications. There is nothing a doctor can do to help you ready yourself to have children, i wound up with a hysterectomy at 20 years old as many vascular patients have. I am so sorry your going through this i just dont understand why you think you must go to the london from ireland when a phone consultation from a caring local doctor would suffise and get your life on track. The doctors in the uk must want to diagnose them yourself now it sounds to me like if you could have the doctor remove the diagnosis of eds then this would solve your problem but honestly you know if you have it. there are no answers. there are many support groups on facebook that can help there are thousands of us there that will help and give advise. please reach out to them.

    • Lesa Isa-Zebra

      I have had you on my mind lately and wondering if you have had any sucess in this situation. I noticed there is a petition out there for you and being in the United States I did not know if we were able to sign since your trying to change goverment it probably wont help so i did not but if this is an out cry petition please let me know i will be glad to sign it. Just wanted you to know I am thinking of you. Also on the vascular eds note there are some markers that are identifiable on most of us. when you look in the mirror at your chest are your veins visible through your skin. I have a major difference under my tongue than most people you can see little vascular breaks that have healed there is just enourmouse amounts of vascular scaring under the tongue. Also i get patters that look like spider webs on my legs of little ruptures that never ever heal, i had one that looked so bad that i got a tattoo over it becuase it looked so terribl. my emial is tinkswrin@gmail.com if you want to talk i will be glad to listen. I am also a registerd nurse so maybe there is some guidance that I can give you, that will help you communicate with your doctors. sending you hugs i also wanted to say that i have 3 children 2 that have eds one that does not and even though eds is miserable i would not change having children they may be the ones with the answers who knows. If you want to have a baby with eds let me give you a recomendation just take really good care of yourself while your pregnant and make sure to have a c-section and make the doctors aware that you could possibly be vascular so better safe than sorry. Labor can be very stressful on the blood vessels and arteries so keep the situation controled have a c section that way your not at risk and tell them that you need a duo derm layer for the stitching and stapeling so your skin will heal and not tear. Hugs to you.

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