Carlow mother appeals to HSE for greater recognition of rare disease

A Carlow mother is calling on the HSE to send a doctor or consultant to an International Symposium on a rare disease which she and her children suffer from.

Karen Egan and her teenage daughter, Jordan, have been campaigning for greater recognition from the Health Service for Ehlers Danlos Syndrome – a connective tissue disorder.

However Karen says there’s still very little recognition of it or treatment for it in Ireland.

An EDS symposium takes place next month but Karen told KCLR Live this morning that so far no Irish consultant or specialist is attending.