Dudley North MP Ian Austin is backing a Parliamentary campaign for better treatment for people with the genetic disorder PKU (Phenylketonuria).
Approximately 6200 people in the UK have PKU, a genetic disorder that affects their ability to process particular proteins. Failure to treat the condition or follow a strict diet can affect the nervous system and even lead to brain damage. Children and adults with PKU must stay on a restricted diet for life and cannot eat foods like meats, dairy, eggs, beans or nuts. Early diagnosis, treatment and advice can prevent symptoms.
It is estimated almost 600 people in the West Midlands could have PKU.
Austin was alerted to the condition by his constituent, Kirsty Thornton of Dudley and has met campaigners and is joining a new cross-party Parliamentary campaign to ensure that people with PKU have access to the treatments and supplements they need.
The UK once led the world in treatment for PKU. It was a team at Birmingham Children's Hospital in the 1950's that first developed the low Phe diet for people with PKU.
Today however the UK lags behind our European neighbours in adopting new treatments and some people with PKU are still held back by their condition in Britain.
“When a constituent contacted me and asked me to support families in Dudley and the West Midlands that are affected by PKU I’ve promised I’ll do everything I can to help.
“So this week I’ve met with campaigners from the National Society for Phenylketonuria (the NSPKU) and joined a new Parliamentary campaign to ensure that people with PKU are able to access the treatments and supplements they need.
“This is exactly how politics should work. It’s my job to listen to local people and speak up for them in London so that people with PKU won’t have to struggle due to their condition.”
Kirsty Thornton said :
“I am lucky that I am able to manage my PKU well most of the time and have achieved a career I love as a zoo-keeper at Dudley Zoo. However many people with PKU can really struggle. I did have significant problems for a while accessing the supplements I needed which made me very unwell. I am really pleased that Ian Austin understood the problems people living with PKU can face and will work to help improve care and treatments for everyone."