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A Mother-Daughter Bond Through Narcolepsy

February 28th, 2024

Narcolepsy Network Board Member, Carol Gilmour, and her daughter, Caroline Arnette, former Narcolepsy Network Lead Youth Ambassador, are on Capitol Hill this week advocating for rare disease research funding. We wanted to learn more about their relationship, advocacy, and journey through Caroline’s diagnosis with narcolepsy, so we asked them to share their story with us.

Caroline, in a few sentences, can you describe the types of advocacy you have participated in (like Youth Ambassadors and Rare Disease Week) and how they have helped you in your journey?
I have been very lucky to have had the opportunity to participate in many advocacy activities. I became the Narcolepsy Network  Lead Youth Ambassador, where I learned how to ask for accommodations and support, how to teach others those skills, and accept and embrace my narcolepsy. I have spoken at conferences, including for Narcolepsy Network and for teachers, led support groups for teens, advocated on Capitol Hill, started a disability support organization at my university, and spread awareness of how to recognize symptoms to help people get diagnosed. This included being in educational videos, participating in medical school grand rounds, and presenting at doctor’s offices and to school nurses.

What does the support from your mom mean to you?
The support of my mom means everything to me and saved my life. Unfortunately, I have met so many young narcolepsy patients that have had to fight tooth and nail to get their families to believe that they have narcolepsy and not just “an attitude problem” or a lack of work ethic. Before I was diagnosed, my mom believed me when I told her I knew something was wrong. She was my greatest advocate before I was well enough to be my own advocate. Once I was healthy enough to fight for myself, she still supported me, helping me navigate insurance coverage of my medications, taking time off work to travel with me to events, and always being there for me when I needed her. My mom’s involvement in my diagnostic odyssey and advocacy journey enabled me to be the person I am today.

Carol, in a few sentences, can you describe the rewards you get from participating in Rare Disease Week (RDW)?
RDW is an empowering event that is energizing and humbling. About 800 advocates from around the country, who face a variety of challenges, attend. Everyone there is determined to try to improve the lives of people with rare diseases by getting national legislation passed and keeping the need to support rare disease research funding and legislation in the minds of our representatives. When I attended I got support from friends, old and new, and discovered my voice, learned how to be an advocate, and became motivated to be more involved in narcolepsy and rare disease advocacy. It also made me realize that not everyone has an established support network for their condition, which made me further appreciate what we have here.

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Date Created: February 28th, 2024
Last Updated: February 29th, 2024