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The Trouble With Sleep

What are sleep disorders? How can you tell if you have one, and how can you get better? Farah Hasan is a graduate student researching health science education. Farah shares her personal journey from diagnosis of idiopathic hypersomnia at age 21 to treatment. As a speaker with Project Sleep's Rising Voices of Narcolepsy leadership program, Farah discusses the importance of sleep health and the need for research and public awareness to reduce the delay in diagnosis and remove stigmas surrounding sleep disorders.

When people think of sleep disorders, they often think of insomnia, sleepwalking, or sleep apnea, but there are many other sleep disorders.

There are certain ones we tend to be more familiar with like mentioned above.

In reality, there are upwards of about 80 sleep disorders. There are certainly ones that we don't hear as much about. Narcolepsy and idiopathic hypersomnia are covered a lot, but there are countless others and lots of different types of symptoms and kinds of conditions.

How does an individual tell if one has a sleep disorder? These days, a lot of people have issues with sleep. They might not get enough hours of sleep, they can't sleep, or they feel tired during the day. At what point does it become an issue where a person goes to the doctor?

There's a sleep-deprived culture and a lot of the hustle culture feeds into that. So, it absolutely can be difficult to tell whether or not your sleep issues are serious. As mentioned earlier, there are so many different types of disorders that they all look different. Depending on the disorder, it could be things like having difficulty falling asleep or staying asleep. Sometimes it's falling asleep at inappropriate times or unusual behaviours during sleep. Those are potentially things to look out for. With the kind of day-to-day that we have, if an individual notices consistent challenges in one's sleep and if it's happening repeatedly, that's when it's definitely worth having a chat with their doctor.

The condition that Farah Hasan has is idiopathic hypersomnia. Hypersomnia is excessive sleepiness and “idiopathic” just means we don't know why. That's the kind of diagnosis she has and also has certain symptoms of a disorder called narcolepsy, which is another one that not too many people are familiar with. Excessive sleepiness or excessive daytime sleepiness, in particular, are the big symptoms that we see and there are a lot of invisible elements as well. Things that sometimes get lost in the media portrayals that are funny, like people falling asleep in their soup, is not what narcolepsy looks like. Sometimes it's this really intense desire to sleep, but it doesn't mean just passing out all of a sudden. There are also symptoms like hallucinations related to sleep or something called cataplexy when there's a loss of muscle tone when there's intense emotion.

Farah had certain experiences and even within that one symptom, people experience it differently. For some people, laughter is often the thing that will trigger it, but other strong emotions like anger and sadness can trigger it as well. It could be a slackening of the jaw, buckling of the knees, or falling right to the ground. Even just within that one symptom, there is a huge range of how it can look for different people. Farah had a few, but it's been very mild.

Unfortunately, it's a long process for an individual to get diagnosed. There is a shocking delay between the onset of symptoms and the diagnosis. For something like narcolepsy, it's usually 8 to 15 years that people go without getting a diagnosis!

Truly, that's a surprising fact. A huge part of people's lives goes without knowing. A lot of people don't even get diagnosed. When Farah recalled, she suspected that she had symptoms right from around the age of five (kindergarten). It wasn't until university, when she was studying for the MCAT, wanting to be going into medicine that she started to see more and more symptoms appear. Farah had to analyse and ask herself if it was happening all the time because sometimes we'll write things off. We'll say that's a weird thing that happened, but it was persistent and that's kind of when she clued in and realised that she didn’t know what was going on, but she needed to see a doctor about it.

The process that Farah went through in order to get diagnosed. It started by going to a family doctor and then getting some sleep studies done. She connected with a sleep specialist and there's a bit of a waiting period while you wait for the sleep study to happen. Eventually, it led to getting treatment through medication and also learning how to adjust to certain lifestyle factors as well.

A person has one sleeping condition. Farah's sleeping condition was idiopathic hypersomnia, but there is this grey area and a lot of people sometimes get caught in the middle. In terms of what life looks like, it involves certain adjustments. Farah thinks the empowering thing has been to do all the things that she still wants to do. Going off to grad school was a big part of that for me, but it's tweaking the way you do things. Like learning to take naps at the right time, adjusting the way she studies, and being aware of her capacity. It was also important for her to be honest and have those conversations with supervisors and bosses to explain what that looks like for her and making those adjustments was really critical.

Farah's advice for someone who thinks one might have a sleep disorder is to see a doctor. Especially with so much access to information, it can be tempting to go look up online like Google.

It can lead to people looking at symptoms online and trying to self-diagnose. Farah thinks it's really important to seek medical and professional advice there. There's an incredible amount of stigma around sleep disorders. She believes that a lot of it is just these invisible elements that people doesn't recognize. For instance, thinking someone's lazy, or being a student and having people think that one is just bored with school.

It's a serious condition and it is important to address those things. When it comes to loved ones, Farah thinks so much of it is just learning since obviously knowledge is power and it's empowering as well. As a loved one, there can be an incredible amount of pressure to support and to feel like you have to find the answer. So much of the support just comes from trying to learn about it and understand what it is. One in five people are estimated to have a sleep disorder of some sort and that's a huge number and it's not uncommon. So again, just learning and being aware that could be anybody, it could be you, or it could be a loved one.

Farah is very excited that she is part of the rising voice of the Narcolepsy Speaking Program. It's a project run through Project Sleep and the goal with that program is to empower patients, to use their stories, to raise awareness, and help people to learn about these disorders. Some sleep disorders we hear about a lot, but other ones, really aren't heard about as much. Even with narcolepsy, people think that might be rare! One in 2000 people roughly, which is about 19,000 Canadians who might be experiencing narcolepsy.

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