Fibromyalgia Sufferers of Ireland and Spina Bifida Hydrocephalus Ireland to appear before Health Committee

5th December 2012

Spina bifida is a neural tube birth defect which occurs within the first four weeks of pregnancy. The spinal column fails to develop properly resulting in varying degrees of permanent damage to the spinal cord and nervous system. At least 80% of people with spina bifida have some degree of Hydrocephalus. This condition is due to an accumulation of cerebrospinal fluid within the ventricles of the brain, resulting in raised pressure inside the head.

The term Fibromyalgia describes a syndrome with widespread and often disabling muscular pain and areas of tenderness. It is a central nervous system disorder where the nervous system is ‘over-sensitised’ and is characterised by widespread pain and extreme fatigue. It is reported that there are up to 50 symptoms associated with the condition, including pain in the limbs, neck and back, muscle fatigue and tiredness, sleep disturbances, memory difficulties, irritable bowel and bladder problems, numbness and tingling sensations and cold and flu symptoms.

Committee Chairman Jerry Buttimer TD said: “Tomorrow we will have an opportunity to meet with the organisation providing support and information to those suffering from Fibromyalgia. We will be particularly interested in discussing the issues and challenges those with the condition face on a daily basis, in particular getting a diagnosis, the range of treatments available, medication and how the condition impacts on quality of life in terms of mobility, ability to work and engage in leisure activities.

At our meeting we will also meet with representatives from Spina Bifida Hydrocephalus Ireland, the group which provides information, support and advice to people with Spina Bifida and/or Hydrocephalus, their parents and carers, as well as promoting social inclusion and equality for people with Spina Bifida and/or Hydrocephalus in Irish society. It will provide them with an opportunity to address the Committee on the key challenges and concerns for the organisation.”

This meeting starts at 9.30am on Thursday, 6th December in Committee Room 2, LH 2000.

Committee proceedings can be followed live here.

For further information please contact:

Ciaran Brennan,
Houses of the Oireachtas,
Communications Unit,
Leinster House,
Dublin 2

P: +3531 618 3903
M: 086-0496518
F: +3531 618 4551