FCS Day of Action 5th December 2018
Often shortened to FCS, Familial Chylomicronaemia Syndrome is a rare genetic disorder that affects about one person in every million. Patients with FCS are regularly in severe pain and often have a life-threatening inflammation of the pancreas.
Living with FCs means living on a very restricted diet to lower the risk of pancreatitis, but this doesn't take the risk away altogether. Eating less than 20g of fat a day limits what anyone can eat when you consider that one slice of bread and butter contains 10g of fat.
Because this condition is so rare it is often misunderstood and it can take many years for someone to get a correct diagnosis and even then the support and advice people get can be patchy and misleading.
On 5th December we organised an FCS Day of Action to give politicians an opportunity to hear first hand what it's like to live with FCS. We arranged for patients to invite their MP to one of the committee rooms at the House of Commons and share their experience of what it's like to have FCS.
Working closely with the LPLD Alliance MPs heard how FCS had affected someone throughout their life, touching on every aspect of their lives from birthday parties as a child, through challenges due to frequent illness through education and the impact on everyday working, family and social life as an adult.
The FCS Day of Action helped MPs understand more about the difficulties living with FCS so when they have conversations with decision makers in the NHS they have a greater appreciation of the challenges people have.
We hope to continue our conversations with MPs and urge those that attended, and those that couldn't make it on the day, to take FCS seriously and together we need to take some action on FCS.
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