Maria Byrne (Fine Gael) | Oireachtas source

I welcome the Minister of State to the House. Ehlers-Danlos syndrome is a disease that would not be very widely known yet about 500 people in Ireland suffer from it. It is a soft tissue disease where patients suffer a lot of pain and where their joints might be rubbing off each other. Many children have been diagnosed with this disease. I spoke to the chairperson of the representative group in Ireland. I arranged a meeting between the Minister for Health and some people with this disease during a visit to Limerick earlier this year. I know the Minister took a note and was very aware of the different issues. I know he has had a meeting with the HSE with regard to it but there are a number of issues relating to the disease.

A main one is that there is no doctor in the country who can diagnose the disease fully or sign off on it in terms of the cross-border directive. If the patient has to have an MRI, it must be an upright MRI but there is no upright MRI scanner in Ireland. Patients must go to Belfast or London. The scan costs about €2,000 and is not covered under anything in the current system so people must pay for it privately if they want to have the operation, which many of them must have. I know a young girl who had the operation in Barcelona earlier in the year and has had to go back twice since then. The family fundraised for this operation because the girl was in such pain. She was 14 years of age. There are many more cases like that.

While it is recognised, there is nobody available to sign off on cases and there is no specified neurologist. Many children with the condition are on a waiting list of about two and a half years to see the neurologist at Our Lady's Children's Hospital, Crumlin. There are many issues and there is a considerable amount of pain, not just the pain the child or adult with the condition goes through but the pain their families go through. I know of a few adults with the condition. I know one family where the mother and her son have the condition. Patients and their families experience a considerable amount of pain and cost. I would like an update regarding what is happening with the HSE and what it will do for the people with this condition.