Inherited cholesterol facts
  • People with familial hypercholesterolemia (FH) are at greater rish of heart disease
  • At least 1 in 500 people are believed to have FH but may be more as in other European countries
  • Of the 120,000 people in the UK with FH only 15% – less than 1 in 5, know they have the condition
  • At least 28,000 children in the UK have FH but only 600 of these are known
Beyond the Call of Duty for FH : the Rianna Wingett Award

Beyond the Call of Duty for Familial Hypercholesterolemia​ (FH)

PATIENTS - This is your chance to nominate your GP or health professional who will receive a £150 award presented at the annual conference.
Submission deadline: CLOSED

Rianna Wingett Award flier 2017

Read Rianna's story

 
FH Toolkit
HEART UK FH Toolkit

The HEART UK Familial Hypercholesterolemia​ (FH) Toolkit is aimed at commissioners and clinicians, with a suite of materials designed to aid implementation of the guideline.

 
Identification and management of FH full guideline
Download

Click the link to download: Identification and management of familial hypercholesterolaemia (FH) Full guideline (PDF)

 

Rianna Wingett

Seconds after finishing a cross country run and telling her friend "Oh God, I think I am going to die", Rianna Wingett's heart stopped beating.

She collapsed on the school playing fields in November 2009.  A post-mortum revealed one of the main arteries to her heart was so clogged with cholesterol that the gap left for the blood to flow through was no bigger than a pin prick.  The condition that so tragically ended Rianna's life is Familial Hypercholesterolaemia (FH), a condition caused by a faulty gene which results in very high cholesterol levels from birth onwards.

Rianna's mother, Amanda, had been diagnosed with the same condition at the age of 18 and Rianna's grandmother also had very high cholesterol levels.

Only 15 months before Rianna died, new NICE guidance had been set in place to help ensure that tragedies like this cannot occur. Sadly the Wingett family were denied the essential cholesterol test that would have revealed that Rianna's cholesterol was very high, putting her at exceptionally high risk of early heart disease.  One heart disease expert later estimated that Rianna's cholesterol level would have been as high as 20 mmol/l, 4 times the normal adult level. 

The family were preparing to celebrate Rianna's 12th birthday when her dad, John, took a call from the school saying Rianna had collapsed.  John phoned Amanda, who had been buying last minute birthday presents, they both headed to the hospital as fast as they could.

Despite all efforts, Rianna died. The post mortem revealed Rianna's heart had become enlarged because it had been working so hard to pump blood  through blocked blood vessels, due to her inherited cholesterol problems.

  • 1 in 500 people in the UK are estimated to have the heterozygous from of FH (HeFH) which is inherited from a single parent.
  • To date only 15% of people with FH are formally diagnosed.
  • 1 in 1,000,000 people are estimated to have a more severe form of FH- Homozygous FH (HoFH) or compound heterozygous FH - where the child inherits a faulty gene from both parents.
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Your stories

Read about someone who has experienced the difficulties of living with FH on a daily basis.