Ellis Oliver from Newry with her two children Noah and Jupiter (Image: Submitted) Two Northern Ireland mums have opened up about their family’s experience of living with an invisible disability and its impact on their daily lives. Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissues, which provide support for skin, tendons, ligaments, blood vessels, internal organs and bones. EDS can affect people in different ways as for some, the condition is relatively mild, while for others, their symptoms can be debilitating.
Ellis Oliver and Jenni Allen are among those raising awareness about EDS or hypermobility spectrum disorders (hEDS) in a bid to improve the diagnostic process and provide better care and support for those in need. READ MORE: NI women with rare condition on why nobody should be left to fight on their own READ MORE: NI mum's vital new role helping improve the lives of others battling illness After a childhood of aches, pains, joints swelling, going from being on the athletics team to sleeping 16 hours a day as a teenager, Ellis, 39 and from Kilkeel , had her first child, Noah, at 27 and from around three years of age, he started having the same symptoms as she recalls: "Frequent dislocations, crying with pains in his legs, lying down everywhere we went, various allergies, needing to be carried or always in the buggy." Noah was finally referred to Belfast City Hospital, where he was diagnosed with hEDS after the consul.