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From: TSS (216-119-132-46.ipset12.wt.net)
Subject: Grieving son tells WHB to be open and honest (was suffering from Variant CJD)
Date: October 28, 2004 at 9:07 am PST

Date: 28-10-2004-

Grieving son tells WHB to be open and honest

BY MARY O'CONNOR

A Loughrea man is calling on the Western Health Board to be "more open and honest" after it issued conflicting reports about the cause of his 83-year-old mother's death.

Gabriel Kelly from Loughrea says he was told by hospital authorities on October 14 that his mother Brigid - who died in Portiuncula Hospital on October 19 after a 10 week illness - was suffering from Variant CJD, the rare fatal brain condition which is linked to mad cow disease.

He says the Western Health Board confirmed to RTE on Tuesday that this was one of the suspected causes of the patient's death. However, it later retracted the statement and said that CJD was one of a number of possible causes of her death.

Mr Kelly wants the WHB to clarify the situation. I want them to be more open and honest. We were told my mother had vCJD on the 14th October after she had an EEG [a diagnostic test to measure the activity and state of the brain] at UCHG the previous day. The hospital confirmed that to RTE on Tuesday of this week but retracted it later. Unfortunately, we now have to wait for post mortem results to confirm this or otherwise. The health board should clarify this situation. It would be unforgiveable if the hospital authorities put a v before CJD.

He also wants to see an urgent reform of the country's health system. "Most people would agree that this is imperative. The whole hospital and health system should be knocked down, razed to the ground. We had to wait 12 weeks for my mother to be diagnosed. First, they [the hospital] thought it was a stroke or vascular dementia. She had to wait three months for an EEG."

He is critical that there is no counselling available for families of people with CJD or vCJD despite claims to the contrary by one Government minister.

"There is no treatment for either form of this condition. There is also no back-up in place to counsel patients or families. I wouldn't be speaking to you [this reporter] if it was there."

The late Mrs Kelly had always been in excellent health, he says. She had been in Spain in May and was feeling fine. She first began to complain of feeling unwell on July 12.

"We were rightly taken aback. She became extremely unwell very quickly. She was admitted to Portiuncula hospital on 5 August. After having an MRI scan the family were told they needed to have a further scan. The MRI scan indicated that there might be a possibility of CJD. Five weeks after she was admitted, she was asked to have an EEG scan to rule out that possibility. The next day we were told she had vCJD."

The WHB, in a statement issued yesterday (Wednesday), said that Portiuncula Hospital is currently awaiting the test results of a post mortem into a patient who died recently at the hospital.

" CJD is one of a number of possible/suspected causes of death. It will be approximately one month before the test results are available."

CJD (Creutzfeld-Jakob Disease) is a fatal brain disease which usually attacks people aged over 55. Early symptoms include memory problems, mood changes and lack of co-ordination. The disease progresses to shakiness and dementia. Those affected are eventually unable to move or speak. Eventually the person will need full nursing care. Experts say a correct diagnosis may only be possible after death when a post mortem has been performed.

vCJD is a rare neurological condition occurring in about two in every one million people. Research suggests that the condition is the result of exposure to the agent that causes Bovine Spongiform Encephalopathy (BSE) in cattle. A fatal disease, it mainly affects young people. Symptoms include muscle-twitching, a lack of co-ordination and balance, and personality change. Patients survive between six and 12 months after diagnosis.

http://www.galwayadvertiser.ie/dws/story.tpl?inc=2004/10/28/news/52535.html

tss



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