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LPLD  case study

My name is Jill Prawer and I have familial lipoprotein lipase deficiency (LPLD). I was diagnosed in 1964 when I was 2.

There is no treatment for LPLD other than maintaining an extremely low fat diet (I eat a maximum of 10g per day). This is difficult as there is fat in almost everything, mostly hidden, and I can’t chose not to eat! I am only confident of what I am eating if I eat at home or have checked the ingredients thoroughly. I am also advised by doctors not to drink alcohol.

I am lucky to have three children, but each pregnancy got progressively more difficult as fat levels rise automatically in pregnancy putting me at a higher risk of pancreatitis, which is dangerous for both mother and baby. In the second and third pregnancies I became gestationally diabetic and was insulin dependent as high sugar levels turn, to fat increasing my risk of pancreatitis. I am now permanently diabetic, which I also manage by diet.

Living with LPLD is hard work and sets me aside from the normal flow of things. Travelling is difficult and holidays always have to be self-catered. Being away from home and relying on people to cook for me is stressful as mistakes are very often made and I am left with either no food, or food that is sub-standard because it is all I can eat. Food is often the focus of social gatherings and I sometimes exclude myself, or mostly watch while others eat as there has been nothing provided for me. If I know in advance I try to make arrangements beforehand so that I can be catered for. This condition places severe limitations on me and my whole family.

Find other people like Jill who are affected by LPLD.  Visit RareConnect

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HEART UK support
HEART UK support

“The support I had from HEART UK was faultless – they were incredible, helping me understand my condition more”.

LPLD - how did i get it
LPLD - How did I get it?

LPLD is an autosomal recessive condition – to have LPLD you need to have inherited two faulty LPL genes (one from your mother, one from your father).

LPLD - Who does it affect?
LPLD - Who does it affect?

LPLD affects each person differently. If you have LPLD, work with your consultant to find the best diet & treatments for you.