My Favorite Links

My goal these days is to post once a week, so what do you do when you want to read up on more LPLD stuff, but I'm not due for another post anytime soon?  Check out my other favorite resources!

Justine at the good life has a little boy with VLCAD, very long chain acyl-CoA dehydrogenase deficiency.  She has to limit his intake of fats and increase (moderately) his intake of medium chain triglycerides via palm kernel oil and coconut oil, so a lot of the recipes are really similar to those for LPLD and I've definitely been inspired by some of her stuff!  She even does the fancy nutrition facts for each of her recipes, pretty swanky!  And that reminds me, I need to buy some powdered peanut butter on her recommendation...

If you're looking for something to share with your primary care physician on LPLD, there is FINALLY a good resource!  NORD has a physician guide for LPLD now, and I'm telling you, it is GOOD!  I've seen a lot of web sites that were secretly put out there by drug companies that make LPLD sound even worse than it is, I guess to make you feel more helpless and like you need their expensive solution.  This web site is NOT like that!  Very reasonable in its approach, and helpful.  Check it out!

For those of you getting frustrated with your or your family member's LPLD, nothing feels better than knowing you are not alone.  My friend Quinyang has been able to put together a nice little group on Facebook (my own Facebook support group attempt never got a single member that actually had LPLD in it, ha!) with good posts and discussions.  I enjoy interacting with others in the same boat, even if it's just on the internet!

Monica trying to look sophisticated at her Little Flowers tea - lots of moms made food she could eat!  Hurray for community!

If you like to read other people's stories, I find RareConnect the best for that.  I am always amazed by the triglyceride numbers folks have at the time of diagnosis (if you have access, there was a case report just written in the American Academy of Pediatrics journal, Pediatrics in Review, on an 11 week old boy with TG's of 43,000!! wow!), or the ages of diagnosis, or the creative things people do to make the diet more tolerable.  I am still hoping to hear more good things about a woman with LPLD who was due to deliver a few months ago, and was planning to breastfeed - I would love to have more hope for my girls having kids of their own one day, if that's where God calls them!


What about you?  Do you have favorite web sites on LPLD?

RareConnect Community

One of our greatest finds since having this diagnosis is the RareConnect Community for LPLD:

https://www.rareconnect.org/en/community/lipoprotein-lipase-deficiency

There's a place to write your story, make 'friends' with other people in the community (whether it's others with LPLD or other parents of people with LPLD), and discuss whatever is on your mind, The platform isn't perfect, it's difficult to search for old topics especially.  But it's something I rely on for the latest news on LPLD, and we even have an email pen pal for Monica that is Monica's age!

Two of three have LPLD!