31-year-old as Evie Evans-Nevin is a former journalist from west Cork, Ireland. She is mother to Alexander aka Bendy Boy (8) and Olivia aka Ollie Pops N’Clicks (3). In addition to juggling work and family life, Evie was diagnosed with a rare condition called Ehlers Danlos Syndrome (EDS) in 2013, one year after she was married. Other diagnoses include Postural Orthostatic Tachycardia Syndrome, Orthostatic Hypotension and Autonomic Mediated Synope, which are a result of her EDS. She shares her life story about parenting children with special needs children as a mother with special needs.
Evie has spent years advocating for patients’ rights and has spear headed campaigns to raise awareness of Ehlers Danlos Syndrome. She believes that this generation of Zebras need to fight to make life easier for future generations.
Evie loves breastfeeding, babywearing and cloth covered bums.
If it comes in zebra print, she’s gotta have it!
The zebra is the international symbol of rare diseases. Just in case you were wondering about the zebra and zebra print obsession.
She lives by her favourite quote:
“Nil Carborundum Illegitimi.”
If you have any questions in relation to any of the subject matters mentioned in this blog, do not hesitate to contact Evie. Her goal here is to educate and help others.