When Kristina’s Doctor Didn’t Know

Patient Worthy had the privilege of sitting down with Kristina, a wife, mother and student, and hearing about her journey with Narcolepsy.

Kristina found out she had narcolepsy and had been receiving treatment for it before she became pregnant with her second daughter. During the pregnancy, for the safety of her baby, she had to stop taking her medication.
This left her narcolepsy and cataplexy– which can be triggered by strong emotion- uncontrolled. What made this experience scarier, was realizing that the doctor delivering her baby didn’t know much about narcolepsy with cataplexy. Listen to her experience below.

 “I had really bad cataplexy attacks with that particular pregnancy and I would just kind of mention to my doctor who was on call that day that I had narcolepsy. It seemed like she had no idea what I was talking about. I just warned her because I didn’t want to have a cataplexy attack when I was having my daughter because they just hand the baby to you and if I didn’t have any muscles working at that point in time, that wouldn’t be good. I could drop her. But she had no idea what I was talking about- I mean the way that she was talking about it- she wasn’t even using the terms correctly and that’s pretty scary. I feel that you should at least have some general idea of what things like narcolepsy, just rare disease, have a general idea of what it is.” -Kristina


Have you had experiences with a physician not knowing about your disease? What did you do?  Comment below and be sure to check out the rest of Kristina’s video series!