Dudley North MP Ian Austin is taking part in the PKU diet challenge on Thursday 28th June to support Dudley residents who are living with the rare condition.
Approximately 600 people in the West Midlands have PKU (Phenylketonuria), 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.
The PKU diet challenge will see Austin sticking to the same diet as someone living with the rare condition, which is taking place of International PKU day on the 28th June.
Austin was alerted to the condition by his constituent, Kirsty Thornton of Dudley and has met campaigners and joined the cross-party Parliamentary campaign to ensure that people with PKU have access to the treatments and supplements they need.
Austin joined the All-Party Parliamentary Group (APPG) on PKU. The APPG has been working with the National Society for PKU (NSPKU) to raise awareness of the condition and to find a way to commission the drug Kuvan on the NHS. Kuvan is the drug used to treat PKU, and is widely available throughout Europe. However, it is currently unavailable in the UK.
Members of the APPG on PKU are therefore pressuring the Government to make Kuvan available in the UK. The drug is currently in the appraisal process, but with no end date in sight, many of those affected in the UK are disappointed with the handling of the drug’s appraisal process.
“When a constituent contacted me and asked me to support families in Dudley that are affected by PKU I’ve promised I’ll do everything I can to help. I decided to take part in the diet challenge to see what those living with the condition have to go through every day.
“I am quite worried about sticking to the diet as I know it is so restrictive, but I am determined to do it properly! I met with Anita MacDonald, a nurse from Birmingham Children’s hospital, in Parliament this week and she explained to me exactly what was required.
“I am lucky that I’ll only be doing this for one day, it’s not that easy for constituents who have to live with PKU every day - it must be absolutely relentless, no breaks for birthdays or holidays.
“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.”