Several rare-disorder groups, as well as narcolepsy-specific organizations, provide support for parents, spouses, and other loved ones of people with narcolepsy.
By Lindsey Nolen
1. Social Media
Social media has become a powerful tool to connect individuals across the globe. In the case of narcolepsy social communities, it means caregivers come together virtually to share their experiences and get information from peers.
“Awareness and education campaigns are a positive way to engage with the community,” says Monica Gow, founder and executive director of not-for-profit Wake Up Narcolepsy (WUN), which has social media accounts on Facebook, Twitter, Instagram, and Pinterest. “The most challenging aspect of meeting narcolepsy caregivers’ resource needs is that the caregiver comes in many different roles, including parent, spouse, adult child, or friend. We have to be able to provide resources to cover all these different relationships. Social media plays an important role for caregivers and, in some instances, can act as a lifeline.”
Narcolepsy Network, a nonprofit dedicated to advocating for people with narcolepsy and their families, increasing public awareness, and promoting research, is also active on social media channels including Facebook, Twitter, and Instagram. Christine Hackenbruck, executive assistant at the Narcolepsy Network, says searching for “narcolepsy” within Facebook brings up several pages and groups that caregivers may find useful. “Social media is a great resource for narcolepsy caregivers….Since social media is available 24/7, people are able to ask questions and learn more about the disorder so they are well equipped to care for someone with narcolepsy,” she says.
2. Organization Websites
From educational videos to tips on coping with narcolepsy through the COVID-19 pandemic, organizations’ websites are an ideal resource for those searching for support or guidance.
“The greatest resource needed amongst caregivers of people with narcolepsy is easily accessing accurate information about narcolepsy,” Gow says. “Wake Up Narcolepsy offers many resources for caregivers including education and support.”
Caregivers looking for information should click on the “About Narcolepsy” tab on wakeupnarcolepsy.org to find general information on the sleep disorder, such as available treatments and FAQs about symptoms and diagnosis. The “Additional Resources” section offers videos from clinicians and people with narcolepsy, as well as roundtable discussions. Also available are two digital brochures: a general one about narcolepsy and one specifically about narcolepsy in children.
“Understanding and accessing free, factual information about a medical disorder such as narcolepsy is a starting point. People need to understand the medical disorder and WUN’s website offers this information,” Gow says. She estimates that 30% to 40% of WUN’s website visitors are caregivers.
Hackenbruck says caregivers should seek an accurate understanding of the disorder, as narcolepsy is not synonymous with how it is often portrayed on television. Hackenbruck estimates that Narcolepsy Network serves more than 1,000 supporters each year, including parents, spouses, and other family and friends. The member-based organization offers many resources at no charge.
Also, caregivers can look for the “newsletter signup” button on these organizations’ websites to request alerts be sent to their email inboxes.
3. Support Groups
Narcolepsy Network publishes support group information on its website under the “Get Involved” tab. The organization “started our virtual support groups in March 2020,” Hackenbruck says. “Since then we have received very positive feedback about this offering. We are able to reach a larger number of people that may not have had access to a support group meeting near them. It’s wonderful to host the support group and not only listen but offer advice as well as resources that can really change a child’s life.”
Narcolepsy Network also has a support group on Facebook, where posts are visible only to members within the closed group. Request access at www.facebook.com/groups/narcolepsynetwork; participants must answer several screening questions and agree to the group rules.
Hackenbruck advises caregivers to learn to be patient with themselves and their person with narcolepsy and says attending support groups can help caregivers gain insight into how others are dealing with similar situations.
At Wake Up Narcolepsy, Gow estimates that the organization has had approximately 2,000 subscribers to its online support groups in the last year. Caregivers make up about a quarter of those subscribers, she estimates, or about 500 support group attendees.
“It is most gratifying to provide accurate information to caregivers who are very desperate to learn as much as possible,” Gow says. “With initiatives such as the support groups, it is nice to provide a supportive platform where others can find the comfort and support they need to assist their loved ones. Sometimes it is just knowing that others understand what you are going through—that feeling of being understood is comforting.”
4. Podcasts & Webcasts
Now in its third season, Wake Up Narcolepsy’s “Narcolepsy 360” podcast series has published audio from more than 50 interviews with narcolepsy experts. Available on the major podcast players, the free series has reached 43 countries and had 76,883 unique downloads so far. Gow says, “What better way to receive a 360-degree understanding of narcolepsy than from individuals with narcolepsy, their caregivers, researchers, clinicians, and people from the pharma space?”
Educational webcasts are another way to glean information from narcolepsy experts. For example, Project Sleep, a non-profit organization raising awareness about sleep health and sleep conditions, regularly hosts events, many of which offer valuable information for caregivers.
At a recent webcast featuring Emmanuel Mignot, MD, PhD, a parent with a teenage daughter living with narcolepsy shared a touching message with Project Sleep president and CEO Julie Flygare, JD. She told Flygare that her own parents (grandparents of the person with narcolepsy), who live in Denmark, had stayed up late to watch the online event live and that “they had learned so much,” Flygare shares. “It is moments like this that are most gratifying to me because this might’ve been a door opening for more curiosity or communications for this family….I truly believe that the more we can open up to each other and talk about narcolepsy and how it impacts each of us (as people living with narcolepsy and loved ones), the more opportunities for empathy and understanding for all.”
5. Friends & Family Toolkit
Project Sleep has published a Friends + Family + Narcolepsy toolkit, available under the “Narcolepsy Nerd Alert” section of project-sleep.com, created specifically for loved ones of people with narcolepsy. It’s a collection of guides, tutorials, and other resources, including tips for supportive communication (that is, what to say and avoid saying). “We talk about supporting our supporters in the toolkit, which is super important as well,” Flygare says.
Lindsey Nolen is a Jacksonville, Fla-based journalist who has been writing about healthcare for over 5 years.