I was diagnosed at birth with hypertriglyceridaemia after the newborn heel-prick test picked up on “cream coloured” blood. My mum would later tell me that she had been devastated by this news and had been told at the time by doctors that it would be very unlikely I would live past childhood.

I was born in London in 1954 and I diagnosed with what was the called Hypertriglyceridaemia at the age of 11. My parents realised I had the problem following the diagnosis of my younger sister Jill, as I always had stomach aches and pains after Sunday roasts and fried foods.

I understand from my mother, that the symptoms of my condition of FCS ( not called that back in 1955) came to light when I was 6 weeks old when the milk feed I was on became richer. Until my late teens, all my family and I understood, was that I should avoid dairy rich products and fried food.

I’m a mum of a 6 year old who has LPLD.

My daughter Molly was diagnosed when she was approximately 6 weeks old. After a trip to our local A&E due to a significant amount of blood in her nappy we were sent by ambulance to a children’s hospital in Brighton who were better placed to identify what was wrong with her.