By Rachel Garvey
Rebecca Grant, a student in second year Arts, was diagnosed with EDS back in July 2018 after suffering with health issues over the past eight years, SIN has learned.
EDS is an abbreviation for Ehlers Danlos Syndrome, which is a rare genetic connective tissue disorder and is a result of faulty collagen.
“Collagen is basically the glue that keeps our body together. My joints partially or fully dislocate on a daily basis which causes me great pain,” Rebecca told SIN.
She was hospitalised back in February 2018 as a result of her hip moving out of place, and over the past eight months, has been fighting for a specialist and for treatment.
However, there are no resources and experts for EDS in Ireland. So, like the strong – willed girl Rebecca is, she is collecting donations in order to travel to London to see a specialist and to hopefully get the treatment she needs.
The donations are being collected through gofundme.com and offline donations are also being accepted. Over €3,000 has been raised in the past month, with the goal being €10,000 to travel to London.
“This specific treatment in the United Kingdom is private, and EDS isn’t covered under the treatment abroad scheme,” Rebecca said. Each and every donation is a step closer to Rebecca receiving the treatment she needs.
“I have a range of medical conditions that are associated with EDS that include arnold chiari malformation type 1, where my brain is pushing through the opening of my spinal cord at the base of my skull, and it’s preventing the flow of fluid to my brain and spinal cord.”
“I also have syringomyelia complex, which are cysts that form within my spinal cord and this can cause damage. I also have dysautonomia, which is a disorder that affects my autonomic nervous system, headaches and endometriosis.”
Rebecca was rejected by Harold’s Cross in Dublin, who run a rehabilitation programme, while another woman with EDS was accepted.
“The HSE are funding them to deal with patients who have EDS, but they are rejecting people, it’s not fair.”
Rebecca is now taking action by refusing to let her medical condition take over her life in a negative way. On 29 November 2018, Rebecca set up a booth in Smokey’s Café in NUI Galway from 10 – 4 in order to create awareness for EDS.
As part of the campaign, volunteers were out and about around Smokey’s Café, the Concourse and the Bialann, collecting signatures for a petition that would appoint a qualified doctor in Ireland.
“We were extremely happy with the results of that day, we needed 4,000 signatures and we managed to exceed that number,” Rebecca told SIN.
The support of Rebecca’s friends and family and the people around her are proving that she will receive the donations she needs to travel.
As a student of NUI Galway, she says she is delighted with the support she has received from numerous students and staff, and that positivity is really keeping her optimistic while on this journey to overcome her medical conditions.
Support Rebecca’s gofundme at https://www.gofundme.com/rebecca-eds-treatment
