Rebecca EDS Treatment
Donation protected
My name is Rebecca. I was diagnosed with Ehlers Danlos Syndrome (EDS) in July of this year after eight years of health issues. I have a range of medical conditions which are associated with EDS including Arnold Chiari Malformation type 1, Syringomyelia complex, Dysautonomia, Headaches and Endometriosis.
EDS is a rare genetic connective tissue disorder. EDS is a result of faulty collagen. Collagen is the glue which holds the body together. Because of this, my joints can partially or fully dislocate on a daily basis which can cause me a varying degree of pain.
After being hospitalised in February because of my hip moving out of place I have spent the last eight months fighting for specialist and treatment. We have been informed there are no resources and expertise for EDS in Ireland. My family have no choice but to take me to London to see a specialist and to hopefully get treatment and/or rehabilitation.
EDS is not covered under the treatment abroad scheme as the treatment in the UK is private. If you would like to know more about EDS please go to https://www.ehlers-danlos.com/what-is-eds/
EDS is a rare genetic connective tissue disorder. EDS is a result of faulty collagen. Collagen is the glue which holds the body together. Because of this, my joints can partially or fully dislocate on a daily basis which can cause me a varying degree of pain.
After being hospitalised in February because of my hip moving out of place I have spent the last eight months fighting for specialist and treatment. We have been informed there are no resources and expertise for EDS in Ireland. My family have no choice but to take me to London to see a specialist and to hopefully get treatment and/or rehabilitation.
EDS is not covered under the treatment abroad scheme as the treatment in the UK is private. If you would like to know more about EDS please go to https://www.ehlers-danlos.com/what-is-eds/
Organizer
Rebecca Grant
Organizer