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.
Read more about FCS.
- FH is a global health problem- FH Awareness Day 24th September
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- UK NATIONAL SCREENING COMMITTEE REJECTS CALLS FOR UNIVERSAL CHILDHOOD SCREENING FOR INHERITIED HIGH CHOLESTEROL
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- Emergency heart attack and stroke centres are still here for you- Guest blog by Dr Ricardo Petraco
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- HEART UK responds to Dept of Health announcement on new cholesterol drug
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- Lynne Garton joins HEART UK fight against heart disease and high cholesterol
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- Why we do what we do
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- We are recruiting!
- High cholesterol: Six ‘super foods’ to lower cholesterol and reduce heart attack risk- HEART UK featured in The Express
- Eating fried food and the link to heart disease- BMJ study
- One serving of fried chicken a day linked to 13% higher risk of death, reports CNN
- The NHS Long Term Plan
- Heart attack - the BEST exercise to prevent deadly symptoms revealed. HEART UK in The Express
- Four foods to help lower your cholesterol, reduce heart disease risks- HEART UK in The Sun
- Specialised Services Commissioning Policies published
- Cholesterol warning - just a handful of this ‘superfood’ could prevent high cholesterol - HEART UK in the Daily Express
- Thousands of heart attacks and deaths could be prevented by patients taking higher doses of statins
- Photos from the FCS Day of Action
- Photographs from the Parliamentary launch of HEART UK's State of the Nation report 24th Oct 2018
- State of the Nation report launch
- HEART UK Conference
- HEART UK says BBC coconut oil claim not to be trusted
- Set up a Patient Support Group Meeting in your local community
- Saving Scottish Hearts for Valentine’s Day
- Why it's your heart that matters this Valentine's Day