To bring awareness to sleep health and sleep disorders, Richelle Topping, Cranston resident and trained speaker with the Rising Voices of Narcolepsy program will participate in a “sleep …
To bring awareness to sleep health and sleep disorders, Richelle Topping, Cranston resident and trained speaker with the Rising Voices of Narcolepsy program will participate in a “sleep in” March 17-19 to raise money for Project Sleep.
“Narcolepsy is a chronic neurological disorder that affects the brain's ability to control sleep-wake cycles,” according to the National Institute of Neurological Disorders and Stroke (NINDS). “People with narcolepsy may feel rested after waking, but then feel very sleepy throughout much of the day. Many individuals with narcolepsy also experience uneven and interrupted sleep that can involve waking up frequently during the night.
This will be the ninth annual “sleep in,” and the event will be live streamed over the course of the weekend and will attempt to bring comfort and awareness to those who experience from sleep disorders such as narcolepsy.
“It’s both an awareness event and fundraising event,” Topping explained. “Project Sleep is a non-profit organization that is all about raising awareness about sleep health, sleep equity and sleep disorders. They also do scholarships for students with narcolepsy.”
Topping, who has type one narcolepsy, said that since being diagnosed in 2020 that the Project Sleep community has had a huge impact on their life. Hearing other stories of other people living with the often undiagnosed condition helped to validate Topping’s experience and to realize that sharing her story may help others in the same way.
“I just spoke at Brown University to their brain sciences course students, and at the end of it a student came up to me and told me that she had realized through my talk that she may also have narcolepsy,” Topping said “She said I had inspired her to finally go see a doctor and believe herself, to advocate for herself because in the past she had felt brushed off by doctors.”
The symptoms of narcolepsy are varied and can manifest differently from person to person.
Excessive daytime sleepiness (EDS), the most common symptom of narcolepsy and one that manifests in almost all who have the condition according to NINDS, is characterized by a persistent feeling of sleepiness regardless of how much sleep a person gets over the course of the night. While many may find they occasionally have days in which they can’t brush off how tired they feel, those with the condition will feel this way almost all of the time.
Cataplexy, or the sudden loss of muscle tone while awake, is another common symptom of the condition, and NINDS says can be brought on by extreme emotions. This particular symptom also leads to a common misdiagnosis as a seizure disorder. However, NINDS says that only 10% of narcoleptics experience cataplexy when the condition first begins, while many others don’t see the symptoms of cataplexy until weeks, months or even years after the onset of EDS.
This sudden loss of muscle tone, which NINDS said can be mild and represent itself through a momentary sense of weakness or the drooping of eyelids, can in more severe cases result in full body attacks. These attacks can leave those who have them unable to speak, move or even keep their eyes open, though even during the most severe episodes people remain fully conscious.
Not unlike the more severe cases of cataplexy, sleep paralysis is another symptom those with narcolepsy often have to live with. Described by NINDS as “the temporary inability to move or speak while falling asleep or waking up.” Though the sensation usually only lasts for a few seconds, it can often be accompanied by hallucinations that can create vivid and sometimes frightening images. While many people without narcolepsy, or other sleep disorders, can experience these symptoms at times, for those with conditions such as narcolepsy they are something that must be dealt with far more often.
“They had a huge impact on me when I first got diagnosed, which is why this is really important to me,” Topping said while discussing Project Sleep and the “sleep in” fundraiser. “Leading up to the event, participants share information and stories. It’s kind of like a social media and awareness kind of thing. During the course of the actual ‘sleep in’ weekend the idea is to encourage participants to rest, however that looks for them.”
Topping said that in the past the fundraiser has held events such as scavenger hunts and live yoga meditation sessions. Whether hanging out on the couch watching movies, taking a nap or sleeping in for the morning, Topping said that the point is to encourage healthy rest and comfort.
“I was diagnosed three years ago,” Topping explained, “but I suspect my symptoms started when I was 15. It took me about 18 years to finally get diagnosed. That’s really one of the big aims of all of this, to reduce that time, because the average is 8-15 years between symptoms and diagnosis.”
Topping said that she spent years being unsure of what exactly was causing her symptoms and that it wasn’t until she heard someone else tell their story that she finally realized what she was experiencing from and was able to get a diagnosis.
“There were many misconceptions I had about what narcolepsy looked like,” Topping said. “I didn’t think that that could actually be what it was. Hearing that person’s story is what finally brought it into focus for me. I hope by talking about it and bringing awareness that I can do that for others.”
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