Given my background as a mom with two kids with this deficiency, as a well as a board certified family physician, my goal is to make lipoprotein lipase deficiency / Fredrickson's type I hyperlipidemia / Buerger-Gruetz syndrome more understandable and liveable for other families.
Monday, November 16, 2015
What is LPLD?
What do you tell your friends? Family? New teacher at school?Restaurant server? Here's a run down of my basic responses:
30 second answer –
for waiters, ice cream scoopers, the mom giving me a funny look when she
overhears me telling my daughter that, no, she can’t have the cheese everyone
else is having for snack – but I’m peeling this delicious orange for her!
My daughter has a sort of allergy to fat – she can eat very
small amounts of it, but any more than that will make her very sick and put her
in the hospital.So it's important to know what she eats.
Short answer – for
the slightly more than casual acquaintance
Monica has a rare disease, one in a million chance of getting it, where she is missing an enzyme that supposed to be in every tissue of her body that lets her body use fat for energy. So instead, the fat builds up in her blood and can make her pancreas very sick and put her in the hospital. This hasn't happened yet, but we are very careful that she eats no more than about 10 grams of fat per day.
Teachers and parent friends - here’s the actual letter we gave to Monica’s teacher this
year, both for her edification and to pass out to other parents in class.So far, we’ve gotten nothing but positive
feedback.I know I sometimes feel
like a burden, unnecessarily complicating people’s lives by asking
them to provide foods that my daughter can eat, but I am constantly surprised
by how much people DO want to help even a single little girl to feel included!