Hereditary Fructose Intolerance (HFI) UK
Raising awareness of HFI among healthcare and allied professionals, and support to individuals with HFI and their families.
HFI Information and Support
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What is HFI?
Hereditary Fructose Intolerance (HFI) is an inherited condition caused by a deficiency of the enzyme Aldolase B, which is normally found in the liver, kidneys and small intestine. This means that someone with HFI is unable to metabolise fructose, sucrose or sorbitol. Someone with HFI is born with the condition.
When does HFI show itself?
A person with HFI is affected from birth, meaning their dietary needs must be addressed right away. Symptoms often appear during bottle feeding if the formula contains fructose. It usually shows up when a child is weaned off milk and onto solid foods like fruit, vegetables and other sweet foods.
What are the first symptoms?
Fructose, Sucrose and Sorbitol given to a child with HFI will result in a baby being very unsettled, frequently crying or screaming. It's often mistakenly attributed to "colic".
Diarrhoea and gut pain are common. Ingestion of fructose, sucrose or sorbitol leads to low blood glucose causing pallor and drowsiness.
How is HFI acquired?
HFI is an inherited condition. It is a mutation of a recessive gene. This means that both parents will carry one mutation copy but will not have the condition themselves (unless one of them actually has HFI). If both parents are carriers, there is a 1 in 4 chance of a child having HFI.
How often does it occur?
It is estimated that 1 in 15,000 children will be born with HFI. As it is rare, the diagnosis is often missed. It is vital that health professionals are made aware of the condition and symptoms. Doctors are told that "If you hear hoofbeats, it's probably a horse". We say "If you hear hoofbeats, it could be a zebra".
What happens if it's not recognised?
Ingestion of Fructose, Sucrose or Sorbitol causes hypoglycaemia - abnormally low blood glucose levels. A child may be classed as 'Failure to Thrive'. Accumulated fructose acts as a toxin/poison and causes potential lasting damage to the liver, kidney and small intestine. If not recognised, this can result in death.
What happens in the body when fructose is ingested?
Someone with HFI will have abdominal pain and vomiting, symptomatic hypoglycaemia (which may induce seizures), low phosphate levels, acidosis, and other metabolic disturbances after consumption of foods and drinks containing fructose, sucrose or sorbitol.
What happens if it's not recognised?
Individuals with HFI develop a strong aversion to sweet tastes, which can be a lifesaving response. Continuing to consume unsafe sugars may cause liver and kidney damage. HFI may be detected by dentists when treating adults who have no dental decay, as the absence of cavities can be an indicator of the condition.
How is HFI treated?
There is no treatment as such, but someone with HFI can stay healthy and well as long as they stick to a diet free of Fructose, Sucrose and Sorbitol. This diet is our lifesaver, but is often misunderstood, even by dieticians. The normal "healthy" diet is poisonous for individuals with HFI. Eating out can be difficult!
Who is behind the HFI charity?
The charity was founded by two adults with HFI - Bill Armstrong and Carol Westwood, and Dannie Edwards, a parent of a young child with the condition. It is VITAL to raise awareness of HFI to save lives and prevent unnecessary suffering caused by misdiagnosis or missed diagnosis.
Safe Eating Overseas
Equal Eats Food Card
Equal Eats provides cards or an app for you to show in any restaurant or food premises to highlight Fructose Intolerance. It can be translated into any of over 50 different languages. Follow the link and use code HFISUPPORT for a 10% discount off your Equal Eats card purchase.
We are working with Equal Eats to make a specific HFI card. In the meantime, the Fructose Intolerance version is helpful.
Explaining a safe HFI diet in a different language
Thank you for your patience during this site's construction.
Whilst we build this website, you'll find a little light reading in the blog section.
Grab yourselves a cuppa and find out what HFI looks like in reality!
HFI Blog
Recent article from Rare Revolution magazine
Recent media
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