Almost every year my family sends money to Wake Up Narcolepsy. Since I have this life altering medical condition and I understand how people with Narcolepsy feel, every year I like to donate to Narcolepsy Research in the hopes that they will someday procure a cure or type of miracle medication.
I, myself go through each day and like every other person on earth I live through my struggles but that doesn't always mean that it's easy. I just want people living with Narcolepsy to realize that you are NOT ALONE. You may not know people who have Narcolepsy but, that doesn't mean that you can't get the same understanding and support from your family and friends. And even though I'm only 14 years old, I have hope for my future and that's what matters.
I raising money for Wake Up Narcolepsy so that this unrecognized medical condition will be known. I am raising money to have hope and to raise awareness so people know what kinds of days and nights we narcoleptics have.
I like to think that I will someday drive or be able to get through a whole day without a nap and I do hold the hope of those dreams but the amazing thing is that my family is always going to be there to help me get through the times that I can't do the things that most other people can do.
To everyone else out there who understands the complexity of Narcolepsy and to those who live through everyday the way I do, always remember that YOU ARE NOT ALONE. I am here for those who need support and understanding and who knows you might be sitting right beside a narcoleptic on the train or bus. Who knows.
All I know is that the most important thing to me is hope. Hope for my future. If I have hope for my future that's all I need to keep me going everyday.
If you would like to support my cause of helping narcoleptics get the proper medications and living a hopeful and wakeful life, give a donation to Wake Up Narcolepsy.
I thank everyone who has given a donation to Narcolepsy Research and the future of narcoleptics. I think I speak for everyone out there when I say it is greatly appreciated. Thank You!
Wednesday, 8 May 2019
Thursday, 10 January 2019
Often Asked Questions About Narcolepsy
When I first got Narcolepsy I was 5 years old and didn't understand the seriousness of my condition. As I got older I started to realize more and more how it affects my daily life. I started to ask questions about Narcolepsy and what it was. My parents typically would know the answers. I just wanted to talk about some of the questions that have risen during my time with Narcolepsy.
1. What is Narcolepsy?
Narcolepsy is a rare neurological disorder that affects the sleep center of your brain. The first thing you should know about Narcolepsy is its a life-long medical condition. There is officially no cure but, there are treatments and medications that can improve your day to day life. Narcolepsy can cause excessive daytime sleepiness, cataplexy, sleep paralysis, and some more symptoms. To comprehend the effects and life changing disorder of Narcolepsy visit Wake Up Narcolepsy.
2. Is there a cure for Narcolepsy?
Unfortunately, there is no known cure for Narcolepsy. There is intensive worldwide research being done to find a cure for Narcolepsy but currently there is no cure. The unique circumstances (loss of hypocretin) in ALL cases of Narcolepsy causes for it to be irreversible and life-long. However, Narcolepsy can be safely controlled by the use of regular drug treatments. Some effective drugs are Xyrem, Modafinal and Effexor. The effectiveness of medications can vary depending on the person taking it.
3. Is Narcolepsy dangerous?
It is dangerous because you can have excessive daytime sleepiness or a sleep attack which can cause the disruption of any activity (eating, walking, driving, swimming, etc) being done at the time of the sleep attack. Operating a vehicle with untreated narcolepsy can be extremely dangerous for you and others around you. There is also the cataplexy aspect of narcolepsy which can cause serious danger such as car accidents if you have a cataplexy attack while driving.
4. Is Narcolepsy the same as Epilepsy?
Narcolepsy can come with the symptom Cataplexy which some people mistake for seizures. Epilepsy is a disorder in which a person has seizures. When a person with narcolepsy and cataplexy has a cataplectic attack it may seem as though they are having a seizure; but it is actually just muscle loss in which the body is paralyzed. Cataplexy causes NO internal brain damage that seizures can cause. Narcolepsy is totally different than epilepsy even though it may seem similar.
5. Do people with narcolepsy have trouble sleeping at night?
People with narcolepsy are known for being very sleepy during the day. Although, it is not uncommon for people with narcolepsy to have trouble sleeping at night. I speak from personal experience when I say, narcolepsy has caused me many difficulties during the day and at night.
6. Are you born with narcolepsy?
People are not born with narcolepsy. In most cases, symptoms become apparent during childhood, adolescence and adulthood. However there are cases where children as young as 3 have been diagnosed.
7. Am I alone?
The first thing to know is that you are never alone. Even if your family isn't there to support you, there are many people in the world who have narcolepsy. Some may live near you, others on the other side of the planet. But the most important thing to realize is that you are never alone. There are people who raise awareness about narcolepsy, who believe it is a condition that needs to be known throughout the world. My personal inspiration to let people know about my condition is the one and only Julie Flygare. She herself has narcolepsy and although at times it can be frustrating and difficult I live in peace with myself because of the awareness she raises about narcolepsy. I give a shout out to Julie for all the work she has done for all of us sleepers across the world. She and many others give me hope.
I hope that this helps answer some of your questions.
1. What is Narcolepsy?
Narcolepsy is a rare neurological disorder that affects the sleep center of your brain. The first thing you should know about Narcolepsy is its a life-long medical condition. There is officially no cure but, there are treatments and medications that can improve your day to day life. Narcolepsy can cause excessive daytime sleepiness, cataplexy, sleep paralysis, and some more symptoms. To comprehend the effects and life changing disorder of Narcolepsy visit Wake Up Narcolepsy.
2. Is there a cure for Narcolepsy?
Unfortunately, there is no known cure for Narcolepsy. There is intensive worldwide research being done to find a cure for Narcolepsy but currently there is no cure. The unique circumstances (loss of hypocretin) in ALL cases of Narcolepsy causes for it to be irreversible and life-long. However, Narcolepsy can be safely controlled by the use of regular drug treatments. Some effective drugs are Xyrem, Modafinal and Effexor. The effectiveness of medications can vary depending on the person taking it.
3. Is Narcolepsy dangerous?
It is dangerous because you can have excessive daytime sleepiness or a sleep attack which can cause the disruption of any activity (eating, walking, driving, swimming, etc) being done at the time of the sleep attack. Operating a vehicle with untreated narcolepsy can be extremely dangerous for you and others around you. There is also the cataplexy aspect of narcolepsy which can cause serious danger such as car accidents if you have a cataplexy attack while driving.
4. Is Narcolepsy the same as Epilepsy?
Narcolepsy can come with the symptom Cataplexy which some people mistake for seizures. Epilepsy is a disorder in which a person has seizures. When a person with narcolepsy and cataplexy has a cataplectic attack it may seem as though they are having a seizure; but it is actually just muscle loss in which the body is paralyzed. Cataplexy causes NO internal brain damage that seizures can cause. Narcolepsy is totally different than epilepsy even though it may seem similar.
5. Do people with narcolepsy have trouble sleeping at night?
People with narcolepsy are known for being very sleepy during the day. Although, it is not uncommon for people with narcolepsy to have trouble sleeping at night. I speak from personal experience when I say, narcolepsy has caused me many difficulties during the day and at night.
6. Are you born with narcolepsy?
People are not born with narcolepsy. In most cases, symptoms become apparent during childhood, adolescence and adulthood. However there are cases where children as young as 3 have been diagnosed.
7. Am I alone?
The first thing to know is that you are never alone. Even if your family isn't there to support you, there are many people in the world who have narcolepsy. Some may live near you, others on the other side of the planet. But the most important thing to realize is that you are never alone. There are people who raise awareness about narcolepsy, who believe it is a condition that needs to be known throughout the world. My personal inspiration to let people know about my condition is the one and only Julie Flygare. She herself has narcolepsy and although at times it can be frustrating and difficult I live in peace with myself because of the awareness she raises about narcolepsy. I give a shout out to Julie for all the work she has done for all of us sleepers across the world. She and many others give me hope.
I hope that this helps answer some of your questions.
Sunday, 11 November 2018
Someone New
A few weeks ago, I found out that another student has Narcolepsy and Cataplexy. I was so excited seeing as Narcolepsy is rare in children (most children with Narcolepsy don't live near me).
When I found out that there was another kid who has Narcolepsy I had to know more. I found out that he lives near me which is AMAZING because I can't believe I found another kid with Narcolepsy let alone one who lives near me. It gets better. He's my age; can you believe it!
I'm just so excited to meet him. I bet we'll have lots in common besides if not, I'm sure we'll have at least one thing in common.
He lives in the city where I'll be going to high school so it would be amazing if we got to go to high school together. Having a friend who's my age and who has Narcolepsy gives me hope that I'm not alone. That others like me are out there.
I can't wait to meet him.
When I found out that there was another kid who has Narcolepsy I had to know more. I found out that he lives near me which is AMAZING because I can't believe I found another kid with Narcolepsy let alone one who lives near me. It gets better. He's my age; can you believe it!
I'm just so excited to meet him. I bet we'll have lots in common besides if not, I'm sure we'll have at least one thing in common.
He lives in the city where I'll be going to high school so it would be amazing if we got to go to high school together. Having a friend who's my age and who has Narcolepsy gives me hope that I'm not alone. That others like me are out there.
I can't wait to meet him.
Sunday, 6 May 2018
Narcolepsy Charity
Recently at school I decided to participate in a charity system where you decide what charity you are going to raise money for. I chose "Wake Up Narcolepsy" because I have Narcolepsy; it was only practical to do my charity for Narcolepsy Research. I sold bookmarks, bracelets, necklaces, wallets, key rings, Narcolepsy T-Shirts to raise awareness and other free Narcolepsy give away items. It was very successful and I raised $78 for Narcolepsy Research. Wake Up Narcolepsy specifically said that whatever I made (in terms of money) they would match. Everything turned out well and I'm glad I decided to do this.
Tuesday, 3 October 2017
October is here
I can't believe we're in October already. What are you going to wear for Halloween? It's coming. I'm going to be a sleepy person. I'll wear pajama's, a sleeping mask, slippers, and bring a teddy bear. Starting coming up with ideas for your Halloween costume because before you know it, it'll be here. BOO!
Tuesday, 15 August 2017
Vanna
Most recently we got a poodle. Her name is Vanna. When we got her she was pregnant; we had her for a few weeks then gave her back to the breeder. Vanna had 11 healthy puppies. 5 girls and 6 boys. I can but only tell the truth when I say they were beautiful puppies. We are fostering Vanna for the breeder while she takes care of the other puppies and dogs. She is so cute, more than you can imagine. So cute!!!
Isn't she so cute? I think so and if you don't, you're crazy. I mean how can you not love that cute face.
Birthdays
My birthday was a month ago. It was amazing. I got to have my friends over for a sleepover but two of them couldn't sleep over. I got $55 worth of iTunes cards and trust me that's a lot. And a few other things too. But I also got to spend my birthday with my family which was awesome too. Maybe more. But my birthday isn't the only one in the summer.
In a few days I get to go to my friends for her birthday party. Which is a Drive in movie/ Pool party/ Sleepover birthday party. I've already gotten her presents which I think she'll really like, oh did I say like I meant love. I can't wait. It'll be sooo much fun with her and the other people who are coming too. I just know it will be awesome, amazing, fantastic and more.
In a few days I get to go to my friends for her birthday party. Which is a Drive in movie/ Pool party/ Sleepover birthday party. I've already gotten her presents which I think she'll really like, oh did I say like I meant love. I can't wait. It'll be sooo much fun with her and the other people who are coming too. I just know it will be awesome, amazing, fantastic and more.
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