Rare disease groups against water charges

Two national rare disease groups have added their voice to the opposition to the anti water charge campaign

EDS Awareness Ireland, which represents over 300 families suffering with EDS (Ehlers Danlos Syndrome), is concerned for its members and the financial burden the water charges will entail.

Irish Dysautonomia Awareness represents approximately 100 Irish people who suffer from autonomic dysfunction.

Both groups are working together as both conditions often go hand in hand.

Chairperson of EDS Awareness Ireland, Yvonne Evans Nevin, said, “Water is a basic human right. Many of our members need extra water for various reasons. Having to monitor or cut down on water usage will lead to many health problems for those living with EDS and Dysautonomia. Many EDS sufferers are unable to work, or only able to work part time. The idea of having to pay hundreds of euros per annum means sufferers will find it difficult to pay for much needed physiotherapy sessions, medications and
private appointments.

Lette Moloney, founder of Irish Dysautonomia Awareness is also concerned for the hundreds of Irish people suffering from autonomic dysfunction.

“Dysautonomia is a dysfunction of the autonomic nervous system, this in turn can cause Postural Orthostatic Tachycardia Syndrome (POTS), as well as a host of other conditions and system wide symptoms. POTS can cause high heart rate and either very low or very high blood pressure depending on the type of POTS a person may have and usually low blood volume.

“As a result of this we are required to drink more water than the average person to help regulate our BP and blood volume levels and to keep us hydrated as we dehydrate quickly. Fainting can be a part of the condition as well as serious gastric issues.”

Ms Moloney said people on disability, carers or any social welfare payment or known to have a chronic illness should be, at least considered for a discount if not a complete waver of the water charges.