A few of my family members have familial lipoprotein lipase deficiency, so my parents were advised to have me tested to determine if I also suffered from the condition.
At age 15 I was diagnosed with familial lipoprotein lipase deficiency. I didn’t think much of it, I ignored my recommended low fat diet. Unfortunately, the consequence for my ignorance was not unnoticed. I have serious abdominal pains frequently, and I get very sick when I eat things with a high fat content.
Since this condition is so rare, none of the doctors I’ve seen know much about it. That being said, they aren’t very helpful when I start to have issues related to my condition. Most doctors just brush off my complaints about the abdominal pain. This is very frustrating because pancreatitis is no joke, and I am not taken seriously by most doctors.
People not understanding the condition is a major issue, I feel there should be more awareness about it. I was never given any advice on how to manage my condition, nor was I given a suggested diet. I am pretty much on my own here and that can be stressful. I often feel isolated.
I hope familial lipoprotein lipase deficiency will one day be given the much needed awareness.