Many people with FCS have never met anyone else with the condition. Sharing your experience helps others understand that they are not alone and allows people interested in FCS to understand the impact it has on all our lives.
Thank you for sharing
I am the father of three boys, two of whom have been diagnosed with Lipoprotein Lipase Deficiency (FCS), one born in 2000 and the other in 2006, our oldest son doesn’t have the condition. We discovered the condition when our youngest son was 3 months old. He had started to vomit his feeds (he was…
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.
My name’s Aurélie and I have 2 girls, Sasha and Ella. We’re living in Belgium.
In December 2016, when Ella was 5 weeks old, she was diagnosed with lipoprotein lipase deficiency. She was initially hospitalized for what the doctors thought was gastroenteritis.
LPLD is a ‘secret’ problem; I am not sick to look at, and it is controlled simply by a diet. But, there is no doubt that it is a life threatening, life changing black cloud in my life.
I was diagnosed with familial lipoprotein lipase deficiency when I was 15 years old. I am now 18 years old and I don’t know much about it. None of the doctors I’ve seen know much either.
The restrictions that LPLD – especially with diabetes – put on what’s possible for me to eat make it almost impossible to find something I can eat spontaneously. Eating out becomes a tiresome process of ensuring that whoever is catering will provide me with something suitable. Often this can mean something very basic and not particularly appealing.