A 20-year-old Co Galway woman, who was diagnosed with a complex connective tissue disorder earlier this year, will hold an awareness day at NUI Galway today (Thursday ) from 10am to 4pm.
Rebecca Grant from Athenry was diagnosed with Ehlers Danlos Syndrome (EDS ) in July after an eight year long battle with ill health.
EDS, of which there are 13 types, is genetic and results in faulty collagen in the body - collagen is the glue which holds it together.
The human body is made up of large amounts of collagen which can impact on almost every bodily system, for example skin, joints, muscles, ligaments, blood vessels and internal organs. The joints of people with this condition can partially or fully dislocate causing significant pain.
Ehlers Danlos syndrome often comes with related conditions such as Hypermobility spectrum disorders (HSD ), Arnold Chiari Malformation, Dysautonomia, Mast Cell Activation Syndrome (MCAS ) and many others.
The Grant family says there is no HSE appointed EDS rheumatologist in Ireland. “There are a few private doctors who have taken an interest but they are often very expensive. Many people with EDS are often forced to travel to the UK for treatment which can cost around £40,000 which they have to pay out of their own pockets or by using Go-Fund-Me. Once seen in the UK, people are referred for treatment, when back in Ireland, to Harold’s Cross. They are now declining EDS patients.”
There will be an information table at Smokey’s café on the NUI Galway concourse and information leaflets will be handed out along the concourse as part of the EDS awareness drive. People interested in supporting it are invited to take part.
Rebecca Grant is working with the EDS4IRE campaign which is running an online petition calling for the appointment of an Ehlers-Danlos Syndrome consultant in Ireland.