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A Reason to Give: Christen

December 14th, 2021

Christen was diagnosed with narcolepsy in the 5th grade. She was fortunate to be diagnosed early and was able to avoid the typical stereotypes that come along with the pre-diagnosis phase, including being called lazy, a label that Christen acknowledges is detrimental. For many people with narcolepsy, a quick diagnosis usually doesn’t happen in a narcolepsy journey, but it just so happened that Christen had to undergo brain surgery and felt very tired post-surgery. She thought this was from her recovery, but would also experience cataplexy, a symptom usually only associated with narcolepsy. A doctor recognized her symptoms and sent her to a sleep lab to undergo further studies. In addition to cataplexy, Christen was also experiencing excessive daytime sleepiness, hallucinations, and would rely on naps to help her get her through the day. Additionally, she was also diagnosed with epilepsy and had to navigate what regimen would help her not only stay awake during the day, but also would keep her seizure free. Luckily, Christen’s parents were advocates for her during her schooling and helped her get what she needed to succeed. She was determined to get her college degree and she succeeded. She added, “School may have taken me longer, but I was determined to get my degree.” Fast forward to 2013, Christen attended an epilepsy support group. Th ere she found a sense of community. She explains, “I really enjoyed connecting with others; getting peer support that I couldn’t find with my family.” Christen added, “Even though I have an extremely supportive and loving family, they don’t know what it’s like to have a seizure.” Th is meeting inspired her to want to find the same sense of togetherness for the narcolepsy community. She saw how beneficial a support group could be, so she decided to form her own narcolepsy support group. Th rough attending the epilepsy support group, Christen realized that one of the ways to have a successful support group is to be a good leader and she was determined to be one. She came up with guidelines for the group and would show up to meetings regardless if no one else came. She also manages the group’s meetup.com page, Facebook page, and personally sends out a welcome email to individuals just going the group. She personally reaches out to new group members because, she says, “about half of them have never met anyone with narcolepsy. Before COVID, I would meet new group members in-person, but now it’s online. Th is is just another way to connect with a person who understands what the other person is going through.” While Christen doesn’t push people one way or another with how they should be treating their disorder, she does bring up topics for the group to discuss. They may include: finding a sleep doctor, and not just seeing a primary care doctor for their sleep issues, dietary changes and if a gluten free diet may help, medications and how they can affect the overall quality of a person’s well-being, exercise, and nap schedules. Christen also tries to keep things upbeat at meetings. She usually starts off by asking people to voice something positive that happened during the day. She adds, “This isn’t a bunch of people complaining. It’s a bunch of people relating.” Christen’s group usually gathers about 7-12 people and also invites people with idiopathic hypersomnia to join as well. Meetings alternate between Saturdays and weekdays so people can join without worrying about work conflicts. Some meetings have set topics, like a specific IH meeting or a friends and family meeting, while others are more organic to what will be discussed. Th e group also invites speakers such as doctors to talk about medications and clinical trials, a lawyer to speak about disability, and even informational discussions about mindfulness. Sometimes Christen asks the group to bring tips that help individuals live their day-to-day life. She says, “I learn from the group too! For example, timing a nap is beneficial. Before I would sleep as long as I wanted, but it’s helpful to limit my nap time.” Ultimately, for Christen, being a leader is part of her life’s purpose. She explains, “If I can help just one person, it’s all worth it.” For Christen’s next mission, she hopes to talk with teachers or other school professionals who can reach students while they may be in their pre-diagnosis phase.

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Date Created: December 14th, 2021
Last Updated: December 21st, 2023