Heart uk day of action

On the 10th October 2017 I had the great opportunity to attend the HEART UK Day of Action on Familial Hypercholesterolemia (FH) at the Houses of Parliament, Westminster. The main focus of the day was to educate parliamentary members on the genetic condition FH. My day was full of excitement, first in a lifetime opportunities and exciting education.

We all arrived at an office in London for a 10am start, ready for the exciting day ahead of us. The first part of the morning was full of welcoming hellos and meeting new people who also had the FH condition. This was my first time meeting other people (apart from my family) with FH which was very exciting and made me feel less alone! The rest of the morning was full of professionals educating us about FH Cholesterol. One talk was given by Mr Bayly which was incredibly interesting and was easy for even me to understand (with no real idea of any biology apart from the limited knowledge I can remember from GCSE!) The other talks were organised by HEART UK and Hanover Communications. They told us about shocking, real life stories of people struggling with the horrifying effects of untreated FH. They also provided everyone with a colourful sheet full of shocking statistics and alarming facts. Did you know only 600 children in Britain have been diagnosed with FH Cholesterol? I find this so hard to believe and feel very lucky to be one of those 600! Perhaps it never crossed your mind that high cholesterol can be passed through an “altered” gene and so is an inherited condition!

We quickly grabbed a healthy, posh and delicious lunch before getting whisked away to the Houses of Parliament ready to put all the great words of advice we had just heard into practice. Many MPs and Lords came to the Day of Action and there was a fair share of both the main political parties. All parliamentary members listened as me and the other individuals at the Action Day as we shared our personal stories and highlighted to them that there are a high number of children and adults without any diagnosis or education about FH, just like ticking time bombs. All MPS were offered a photo opportunity holding a pledge card to support the core idea to introduce a national cascade programme to improve the early detection of FH. My MP, Chris Skidmore from South Gloucestershire, came to show his support for the campaign and we are planning to organise another meeting to discuss local issues. As the event came to a close I was lucky enough to experience an outstanding opportunity by having a tour of Houses of Parliament.

You might be asking yourself but what can I do to help? There are many things you can do to help. Are you an active social media fan? Post and share your experiences about FH Cholesterol – the internet is a great way to spread awareness. It could potentially be seen by another newly diagnosed patient and help them feel less alone. Perhaps you want to get your local MP involved? Why don’t you send a friendly and educational email to your local MP today to help spread awareness for FH?