EDS Awareness Ireland

02/05/2026

May is EDS Awareness Month, please share our video and help spread much needed awareness, Thank You and Happy EDS Awareness Month to all our members 🥰🦓

31/03/2026

We are so saddened to hear the news that Prof Rodney Grahame had passed away this week. What he has done for our community is simply immeasurable.
Please take a moment to remember him fondly for he changed the course of many of our lives in ways we shall never forget through research, through diagnosis and through sheer dedication for our cause.

Thank you Professor Grahame,
Sleep peacefully 💕

28/02/2026

We are mobilising.

The Disability Federation of Ireland, Irish Wheelchair Association, and Access for all Ireland have announced a major national protest on Saturday, 28 February.

The government has refused our call for an Emergency Winter Payment. By removing "one-off" supports before a permanent solution is in place, they have left thousands of disabled households up to €1,400 worse off this year.

We are asking our colleagues, supporters, and the public to stand with us. Poverty is not a policy choice we can accept.

Join us: 📍 Garden of Remembrance, Dublin 🕐 1:00 PM 📅 28 Feb

25/02/2026

Public Consultation on the Cost of Disability

Hi folks, please be aware that there is currently a public consultation on a possible Annual Cost of Disability Payment.

The information is hosted on Gov. ie (link below) please read carefully before writing to them.

This consultation is open to EVERYONE (whether you get a disability payment, supports or not.) They would particularly like to hear from disabled people, their families and carers, their representative groups, and Disabled Persons Organisations (DPOs/DPROs). However, it IS open to everyone.

As we all know, certain things are not covered by the weekly disability payment or the medical card and hardly covers the newer basic cost of living, never minding the need of people with disabilities, especially those who can not work to have;

Extra transport and fuel costs for hospital appointments all over the country. (There used to be a helpful payment for this and was stopped for new applicants and never replaced)

Highly restrictive diets where the food costs are very expensive. (There used to be a helpful payment for this and was stopped for new applicants and never replaced, you can keep receipts and claim back 20% for gluten free or diabetes diets through tax on the Med1 form, but if you are not working or not self employed, it’s useless.)

Extra heating.

Extra cleaning supplies for diseases and conditions that may soil clothes or bedding which also means extra electricity for washing and showers.

Extra electricity for plugging in/ charging medical appliances like CPap machines or wheelchairs and their batteries.

Extra medical related things not covered by medical card like plasters, dressings, medical tape, extra aids, splints, supports and devices. Creams, moisturisers and powders for sensitive skin or skin breakdown.

Certain car modifications are not covered and cost a fortune.

Certain conditions are not properly diagnosed, treated or long term cared for here in Ireland and some patients have to go abroad out of their own pockets for treatment and care.

These are just a few things to consider, you may have many more or others to add.

MAKE YOUR VOICES HEARD!!

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27/09/2025

We invite all Irish women to take part in this landmark UCC study on symptom dismissal and diagnostic delays in women’s health.

https://ucc.qualtrics.com/jfe/form/SV_8cvrTsgomSt2ebA

UCC has launched a study on women’s experiences seeking diagnosis for chronic health conditions. The study will look at experiences of medical gaslighting, where patients report their symptoms being dismissed or minimised.
'You can spend a decade trying to get someone to take you seriously and then spend 3 years on a waiting list.'

Researchers at University College Cork (UCC) want to hear from women experiencing chronic health conditions such as endometriosis, migraine, postural orthostatic tachycardia syndrome (POTS), premenstrual dysphoric disorder (PMDD), and mast cell activation syndrome (MCAS).

Launched in September 2025, the research will explore issues including diagnostic delays, patient–doctor interactions, ranging from symptom dismissal to supportive engagement, and how women use symptom-tracking apps to document and share their experiences with healthcare professionals, and responses to that data.

The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

17/07/2025

For as long as she can remember, Dun Laoghaire woman Ursula Hakman (59) has lived a life marked by debilitating pain. She spent her childhood years in physical agony every time she walked up or down the stairs, and battled recurring gastrointestinal problems all her life.

Her issues were put down to fibromyalgia - but at age 52, she was finally diagnosed with Ehlers-Danlos Syndrome. EDS is an umbrella term for a group of genetic disorders that impact connective tissues that provide support to the skin, tendons, ligaments, blood vessels, internal organs and bones.

'I had a lot more problems later in life. I had skeletal problems, chronic pain developed, chronic fatigue developed, I developed hernias, I had 22 surgeries in my life – not all related to EDS – but I started to have tachycardia too, which is a fast heartbeat,' she says.

'With all of that, nobody really knew what was going on, because it was all different things, sort of at the same time. Sometimes symptoms grow, and sometimes it’s less. But that’s a classic thing for a person with EDS, because it has an effect on the whole body,' she adds.

She talks of the difficulties of managing an invisible condition and the barriers patients face in finding the correct diagnosis and treatments.

Her advice to others is 'don’t give up on searching for the right diagnosis. If you have the feeling there’s more to it, keep going and don’t get disheartened, even by a doctor who dismisses you.'

'Never give up,' she adds, 'try to enjoy and keep going with the good things in life because they will always be there no matter what'