Shannon stresses Importance of Medication for PKU Sufferers
Jim Shannon MP for Strangford met with NSPKU Campaigner Caroline Graham and Ann-Marie Hoey on the importance of timely delivery of PKU drug Sapropterin (Kuvan) for those suffering with the debilitating condition.
Mr Shannon said: “It was fantastic to meet with Caroline and Ann-Marie, to discuss how PKU has impacted their families and what necessary steps still need to be taken to ensure those suffering, have immediate access to that precious medication they so desperately need.
“Phenylketonuria, or PKU, is a genetic condition leaving over 400 NI sufferers unable to eat protein without risking brain damage. Therefore, they can’t eat foods such as dairy, fish, meat, pasta, eggs, bread and even some vegetables.Â
“For those suffering with PKU, the precautions and efforts that go into the workings of their diet are exceptionally time consuming and must be approached with extreme caution.
“Whilst this drug has been commissioned in Northern Ireland for those under the age of 22, the genetic trials and roll-out have proven extremely slow, and this is something Ann-Marie has been faced with, awaiting the approval and distribution of this drug for her 4-year-old twin girls, Georgie and Emmie.
“I urge the Director for Commissioning in NI and the Department of Health to strongly consider expediting this roll out, to ensure young children such as Georgie and Emmie can live their lives as ‘normal people’, which so many of those who have received the drug in England, Scotland and Wales have described.
“Northern Ireland must not be left behind and I have requested an urgent meeting with the Director of Commissions to bring to light the sheer devastation this disease brings to so may families and to see what steps can be taken to speed up the roll out of drug Kuvan in Northern Ireland.
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Raising Awareness of Fatty Liver Disease
Strangford MP Jim Shannon MP has spoken on the importance of raising awareness on Fatty Liver Disease in Northern Ireland.
He said: I was delighted to attend this Westminster Hall Debate and talk of the importance of being aware of the symptoms of Liver Disease and Liver Cancer.
“Tackling obesity and ensuring early diagnosis is imperative to ensuring people have the best treatment plan possible.
“I also want to give sincere thanks to those who dedicate so much of their time to providing support and care for those suffering with Liver Disease.”
He added: “I congratulate the Royal Victoria Hospital Liver Support Group in Northern Ireland on its recent 25-year anniversary. Its Chairman, Jim Kilpatrick, is a constituent in a neighbouring constituency, and he is a passionate campaigner who has been instrumental in improving support for patients in my constituency of Strangford – indeed in all areas.
“I commend him for that the support of carers across Northern Ireland. Jim represents an understanding and supportive stance on behalf of the support group, persuading, assisting and making life better, as well as focusing attention on and driving the strategy.
“Their vital work is a lifeline to all my constituents and further afield across all Northern Ireland.
“It is crucial people are aware of the types of lifestyles that can lead to Liver Disease and are more willing to learn of the early symptoms that can lead to earlier prevention.
“I would like to thank the British Liver Trust who have been crucial in leading this campaign and all those who are involved in proving support for those who suffer daily with liver diseases and liver cancers,” said Jim Shannon.
