Tommy Broughan (Dublin North East, Labour) | Oireachtas source

Is the Minister of State saying that a dedicated clinician will be appointed in Dublin or Cork or, in both cities, to treat sufferers of EDS, which is the nub of the problem for sufferers? I would like to quote from a letter which I received from a wonderful young constituent who is due to sit the leaving certificate examination next year. She says:

I need your help. I am living with Ehlers-Danlos syndrome. It is a genetic condition of my collagen that affects so much of my physical and mental health every day. I wake up afraid of what the day will bring while I deal with hospitalisations, constant pain, medical complications, frustration, fatigue, fear and physical challenges. I am terrified I am living in survival mode.

This would be the typical view of young people who suffer from this terrible condition.

I understand that the EU Council recommendation of 2009 states that the report referred to must be finalised by the end of this year. Will it include a full plan and strategy and will it define rare diseases prevalent in this country? The Minister of State indicated that it is proposed to establish centres of excellence in this country. Will this happen soon? Also, will research be undertaken in Ireland into the prevalence of EDS and its cause and appropriate treatments? What is being done in terms of the development of a database of all EDS sufferers in this country?

I have tabled a series of questions on this matter to the Minister, Deputy Reilly and Minister of State, Deputy White, in respect of which I am still awaiting a reply, in which I have set out many of the concerns I have raised this evening. The Minister of State did not respond to my point about whether the centre of excellence in Tallaght hospital relating to the range of EDS conditions has ceased operation. Sufferers of EDS can become frustrated if required to have an MRI scan because, as there is no stand-up facility, they are required to lie down for the scan and, in particular, by the need to have to travel abroad for treatment. I urge the Minister to address this situation urgently.

See this speech in context