Tuesday, July 19, 2016

Thank You

I want to say thank you. Thank you to everyone who has read my blog, thank you to everyone who has sent me words of encouragement, and thank you to those of you who have supported me through some of the hardest years of my life.

Growing up not knowing anyone with Neurofibromatosis was extremely hard. I was the only person living in my family with the condition, which left me feeling incredibly alone. I would never wish my condition on another person, but when I was younger I wished with all my heart that someone close to me would have the condition, just so that I could have someone to talk to.

My parents were always there for me, don't get me wrong. I had one of the strongest support systems out there. My parents were always there to hold my hand, to pick up the pieces when I had a crummy day, and to continuously cheer me on. They were there for test results, procedures, and hospital admissions. But I always wanted something more. I wanted a genuine connection with someone who knew exactly what I was going through.

Lucky enough for me, I live in a time where social media is a prominent feature in most peoples lives. For most people. social media helps you stay in contact with people you may otherwise not talk to, but for me it offered a place of sanctuary. Online, I found dozens of people living with NF. I found people who were going through things that I had been through. They offered words of advice, shared their stories, but most importantly, shared hope. Although much of the advice that was given to me from strangers on the internet was almost identical to the advice that my family gave me, something was different about it. It came from a direct source.

After connecting with so many people through avenues such as Facebook, I decided that I wanted to provide a place where people can share stories, ask questions and inspire others to be the best version of themselves. After much pondering, I decided that I wanted to start a blog, and tada.... Courtney's Column was born! I never once thought that my posts would receive over 20,000 views, but as of last week that goal was met! My posts (and my guest writers posts) have been viewed all over the world, including places such as Japan, Spain, Chile and Australia.

So again, I want to say thank you. Thank you to my adopted NF family. Thank you to the incredible support system I have developed online, and in person. Thank you to everyone who has accepted me for who I truly am. Thank you for not only giving me a voice, but for also listening to it. Without the amazing support network I have developed over the years I really don't know where I would be today.

I challenge each and everyone of you today to speak up, use your voice. Share what you are passionate about! Believe me, you just might be surprised by the results :)

Monday, June 6, 2016

Let it Go

I had the incredible opportunity to have my story featured in !nsp!re Magazine, which is published by BCNF and edited by the incredible Desiree Sher. Feel free to click the link below to go directly to the magazine itself (and see several other super cool stories), or you can read my entry below! 

Let it Go

The last thing anyone wants to be is different.

Conformity and social norms are celebrated, and it seems many people alter themselves to seek validation and acceptance from their peers. It breaks my heart that people who try nothing harder than to be themselves are segregated, and labeled as "different".

I always used to be afraid of that... to be the "odd man out". I kept a secret, a might big one that is, for 18 years of my life because of my immense fear of people finding out my life story. The last thing I wanted people to know was how my body grew tumors everywhere, how my bones were deformed, how my hormones didn't work, and how my life had been consumed by severe anorexia and depression. Why was I hiding such an integral part of myself? Because I was afraid people were going to find out I had Neurofibromatosis.

I did everything in my power to keep my life a secret from people.

When I missed school because of a doctors appointment- told my friends that I was out with teh flu! When I went home because my head felt like it was about to explode from the pain- I was going to the dentist! I was able to lead what really was a second life for almost 18 years before I started to lose sight of who I really was. My life was filled with lies and illusions, and I wanted it all to stop.

My name is Courtney Willoughby. I am 22 years old and was diagnosed with Neurofibromatosis when I was three years old. I lived a very normal childhood, and really didn't know I was "different" until I had a plexiform tumor removed from my back when I was 13. That was when my doctors found an inoperable brain tumor that appeared to be taking my hypothalamus and pituitary gland hostage. Subsequently, my diagnoses included scoliosis, hypopituitarism, growth hormone deficiency, chronic daily headaches, an overactive bladder and ribbon rib deformity. Additionally, I had tumors located in my abdomen, pelvis, arms, legs and ear. I was absolutely devastated by these diagnoses. I thought that this meant my life was over. In my mind, I was different, and that terrified me. Who was going to accept me now?

I soon began harbouring all my fears and anxieties regarding my health until those thoughts essentially ate me alive. I was a hermit to my own thoughts. I constantly feared people would find out about my genetic condition, the "thing" that was taking my life over. All I could think about was how unfair my life was. It was unfair that I had to live with this condition. It was unfair that I had seen 36 doctors in only nine years of my life. It was unfair how I had to constantly wake up in pain, and go to bed with the same pain that failed to be soothed by anything. My thoughts took me to some very dark places, places that I never want to revisit.

I spent about three years of my life in that dark place and then one day I was ready to say "No More!" I was tired of being an inauthentic version of myself. I thought it was time to start coming out of my shell.

It was at this point in my life that I had the incredible opportunity to meet Reggie Bibbs. Reggie is the founder pf the Just Ask Foundation, and is a valuable crusader in raising awareness for Neurofibromatosis.

I can remember every detail of our first meeting of the man that would become my hero. Reggie saved me. After meeting Reggie and hearing him speak about overcoming adversity and embracing your uniqueness, I was inspired to make a change. I came home after meeting Reggie, feeling refreshed. It's like someone hit the "restart" button in my brain. I suddenly felt like a different person.

I came clean with family, friends, and loved ones via a Facebook post. It seemed simple to me, and honestly I didn't expect much of a response. I was however, overwhelmed by the number of people responding and commenting on my post, and even sending me private messages with words of encouragement. This is the point in my life where I decided to "Let it Go", as Queen Elsa said in the movie Frozen.

My philosophies on life changed when I realized my priority in life didn't have to be my Neurofibromatosis. I realized that I didn't have to be my diagnosis. Sure, I was a person living with a chronic condition, but that didn't take away any of my worth in this world. I realized people were going to think whatever they wanted about me, and I could try my best to "fit in". Ultimately I realized that I wanted to choose my individuality over conformity.

Let me break something to you gently. You might already know this.

There are seven billion people living in this world. so there is a pretty good chance that a few of those people are going to dislike you. It's as simple as that. So why would you change yourself for those few people, when you could be living a life where you love yourself?!

You are the only you that you get in this world. and you need to love yourself regardless of your flaws and imperfections. You wake up as yourself, and go to bed the same person each day- you can't fight biology. I tried for so long to be a person that I thought everyone else wanted me to be, and ended up completely miserable, isolated and alone. It wasn't until I accepted that I was a worthy individual regardless of my imperfections, that I really began to accept myself for who I was- NF diagnosis and all.

Life is short, I encourage you to be brave. Be courageous. Fight for what you believe in and find your passion in life. We live in a world full of stress and negativity, but no matter how much you worry about the future you cannot change the outcome. Embrace the here and now, and be the most authentic version of yourself. Trust me, you might just like what you find when you leave your insecurities behind.

- Court

Sunday, May 1, 2016

Neurofibromatosis Awareness Facts!

May has to be one of my favourite months, it's NF Awareness Month!!! 

I know you all are probably in the same boat that I am... constantly needing to educate people (including health care professionals) on what NF actually is, so here are 31 facts that you all can share to help raise awareness! Let's use this month to share information about our condition, and make NF as well known as asthma, diabetes and high blood pressure!

1. Neurofibromatosis is one of the most common genetic disorders caused by a mutation of a single gene.... more than 2 million people worldwide are affected by this condition!

2. Neurofibromatosis is more common than Cystic Fibrosis, Huntington's, and Muscular Dystrophy... COMBINED!

3. There are 3 different classifications of Neurofibromatosis: Neurofibromatosis Type 1, Neurofibromatosis Type 2 and Schwannomatosis, all of which are caused by mutations of different genes

4. Neurofibromatosis is an autosomal dominant disorder, meaning people who have the condition have a 50% chance of passing it onto their children. However, more than 50% of NF cases are due to "spontaneous mutation" of chromosome 17

5. Neurofibromatosis Type 1 has a prevalence rate of 1 in 3,000 people and makes up 90% of all NF cases

6. Neurofibromatosis Type 2 has a prevalence rate of 1 in 25,000 people

7. Schwannomatosis is the most "rare" of the Neurofibromatoses, as it only occurs in 1 in 40,000 people

8. Neurofibromatosis Type 1 is caused by a mutation of chromosome 17, which is responsible for making a protein called "neurofibromin". Neurofibromin plays a role in tumor growth inhibition, which is why people with NF have tumors grow all throughout their bodies

9. It's hard to predict how mild or how severe any NF case will be. Approximately 60% of people will have very mild symptoms (ex: cafe-au-lait spots), while the remaining 40% will have moderate to severe symptoms/complications that may be corrected by surgery/medication or that may be persistent and life long (ex: scoliosis)

10. Neurofibromatosis is a systemic condition, meaning that it impacts all systems of the body.

11. Cafe-au-lait spots are the most common sign of Neurofibromatosis. Cafe-au-lait spots are caused by an excessive amount of melanin in the skin. Melanin is a protein that gives skin its pigment. One of the diagnostic criteria for Neurofibromatosis is to have six or more cafe-au-lait spots that are at least 0.25 inches in diameter. It is rare for tumors to grow where there are cafe-au-lait spots (BONUS FACT: 10% of people in the general population have cafe-au-lait spots)

12. The one distinguishing diagnostic criteria that separates NF-2 from the other Neurofibromatoses is the development of tumors on the 8th cranial nerve in both ears (this nerve is important for hearing). In some cases these tumors can cause loss of hearing, and in some cases deafness. These tumors are almost always seen in NF-2 ONLY

13. Lisch nodules are the most common ocular complication seen in Neurofibromatosis, as approximately 95% of people have these by the age of 6. Lisch nodules are hyperpigmented patches in the eye that do not impede vision. Sometimes they can be seen with the naked eye

14. It is estimated that 15-40% of people with NF have optic nerve gliomas. Most often, these tumors develop in childhood and are very unlikely to develop in adulthood. Typically these tumors are very slow growing and have very low malignancy rates. They can however cause vision loss in some people

15. More than 60% of people living with Neurofibromatosis also have a learning disability. Children with NF are 5 times more likely to suffer from ADD and ADHD

16. People with NF have a slightly higher chance of developing cancer in their lifetime than those in the general population. Approximately 25% of people will have cancer in their lifetimes, and 30% of people with NF will develop cancer

17. Treatments for NF tumors include surgery, chemotherapy, radiation and medications to control various other symptoms/complications. Sometimes chemo and radiation are used for tumors that are not cancerous... in these cases these tumors may not be operable or surgery may not be an option! As of right now there is no cure for NF, but researchers are working hard to find a cure!

18. Skeletal abnormalities include scoliosis/kyphosis, tibial dysplasia, osteoperosis, short stature, macrocephaly (large head) and chest wall deformities are frequently seen in people with Neurofibromatosis

19. Neurofibromatosis occurs equally in all races and all genders

20. No two cases of Neurofibromatosis are alike... every person is going to be impacted differently

** Both Reggie and I have Neurofibromatosis. You can see here how our symptoms are very different!**

21. People who have NF-1 tend to show symptoms by the time they are 10 years old

22. Less than 1% of people with NF-1 will have the following complications: early or late onset puberty, being too tall/too short, excessively itchy skin, hormonal imbalances or having brain tumors other than optic nerve gliomas

23. People with NF-2 tend to show symptoms by the time they are in their late teens to early 20's

24. People with Schwannomatosis can be symptom free until they are 40 years of age

25. The most common problem that people with Schwannomatosis face are issues with chronic pain. This is usually the first symptom that appears before a person is diagnosed.

26. Schwannomatosis does not share the same genetic patterns than NF-1 and NF-2 do. It tends to skip generations... so your grandma could have it. then your mom may not have it, and then you could have it.

27. It is not entirely known if there are things that trigger tumor growth. It seems that there are periods of tumor growth during puberty and pregnancy.

28. 1 in 3 people with Neurofibromatosis have a plexiform neurofibroma

29. NF is NOT the Elephant Man Disease. It is actually hypothesized that the "Elephant Man" had a disorder called Proteus Syndrome, which causes there to be an overgrowth of tissues

30. NF can also be called von Recklinghausen Disease

31. Neurofibromatosis is not contagious. People with this condition are no different than those from the general population. Help me raise awareness by sharing these facts, and commenting below with your own NF Awareness Facts... this is just a very small amount of information on NF!!!

- Court :)



Monday, April 11, 2016

I Wouldn't Change It

You know, people ask me all the time if I could change my Neurofibromatosis diagnosis, would I? Up until a few years ago, I would have definitely said yes. I would have done almost anything to rid myself of this condition. I would have gone to almost any length to rid myself of these tumors, and the chronic pain I subsequently live with. I wanted to change my past. Deny the fact that I struggled with mental illness for five years. All I wanted, was to change me.

Now. I look back at all the thing I wanted to change and ask myself "Why". Why would I want to change those things? Why would I change something that makes me who I am. Changing my past, my condition, and my story means I am changing who I am at my very core. Sure, there are days where I curse my Neurofibromatosis. There are days I am in enough pain that I would do almost anything to make it stop. But I wouldn't change it.

For the longest time, I sought control. I knew that this condition rendered me helpless on so many levels. New tumors show up all the time, new aches and pains grace me with their presence now and then. Weird symptoms pop up out of the blue, most often at extremely inconvenient times in my life... But I've learned to adapt, I am coping. Changing my condition would mean I am changing who I am at my very core. My NF is etched into me as much as my eye colour is.

My NF has taught me significant life lessons, some of which I don't think I would have learned at this point in my life if I didn't have this condition. I've learned that life isn't fair, but we are never given more than we can handle. I've learned that facing adversity only makes you stronger. I've learned that I am worthy of love and belonging. I have learned about the concepts of grace, humility, and compassion. I have learned that courage is a great concept, but it requires us to rid ourselves of the fears of other peoples judgment.

When people hear my story, I am often met with this look. Some people get really quiet, others ask a lot of questions. But in all reality, my story really isn't all that different than yours. We all have faced tragedy and loss. We have all faced uncertainty. We have all had moments of insecurity in life. We. Are. Human.

Sure, I have a brain tumor. To some people that sounds scary, but to me that's just part of life. Glen (my brain tumor) graced me with his presence when I was 13, and I have had a lot of time to cope with the fact that I have something growing in my brain. I can't change that, but I can accept that.

I have said this before, and I am going to say it again.... I do not have to live my life as a diagnosis. I am not my NF, and I never have to be. I am going to live a successful live despite my diagnosis, and I challenge each and every one of you to live YOUR lives to the fullest, no matter what your past may hold. I will always have NF, but learning to accept me is a whole lot easier than denying the unchangeable.


Monday, March 28, 2016

Casey's Story - When I Met Courtney

Hey everyone! I hope you all had wonderful, relaxing and joy filled Easter's! Please take a moment to read this wonderful blog post written by my beautiful friend Casey.... you won't be disappointed!


Hello everyone! My name is Casey. I am proud to say that Courtney is one of my best friends. I was more than thrilled when she asked me to write for all of you. It is an honor. Thank you so much for the opportunity!

It’s probably easiest for me to start from the beginning, back to my second year of nursing when I met this loveable ball of joy. I often ask her, “Do you remember the first thing I ever said to you?” I commented on her new hairdo, as we sat outside the classroom that will forever be a sacred place to me. That’s when it all started. It might seem insignificant to some, but for me, this would always be the day that brought Courtney into my life.

In the beginning, I had little knowledge about Courtney’s condition and what it meant for her. I hoped she would be accepting of that. But I just kept thinking I was so lucky to have her as a friend. I also knew something was different about meeting her. It was unlike all the other awkward first encounters I had in nursing. Very early on, I knew our bond was special.

I want you all to stop and think for a moment. Can you recall a time your best friend in elementary school told you a secret and you weren’t allowed to tell anyone else? Parents thought it was so cute; all they could do was smile and laugh. But what they don’t know (and what I will probably never admit to them) is, they were pretty darn smart because they also realized something we didn’t as small children. They realized the bond of true friendship.

I remember the first time Courtney ever talked with me about Neurofibromatosis. I was so nervous, because I wanted to be caring and supportive, yet I knew so little about the condition. It was after a night of movies, and Court’s favorite, Frozen. We went upstairs to my room, and that’s when it just spilled out of me, like word vomit, “So, what is NF?” She was so good about explaining everything and much to my dismay; she was the one consoling me, as I was sure she had done with so many others who asked her the same question. She knew exactly what to say.

We ended up staying awake until 5 o’clock that morning. I just listened to her, as she shared every part of her NF journey with me. I was astonished by her strength. How she spoke with such kindness and grace about a topic that brought her face-to-face with situations no one her age should have to deal with. She may have NF, but she is not NF. And although she has experienced some extremely low points in her life, she has fought like a warrior to rise out of her darkness and become something beautiful. Yes, of course, I think my best friend is beautiful on the outside, but she also has a beautiful heart. A heart that is selfless, brave and passionate. I have never seen anything like it. This night was a night of exceptional revelations for me. I then flashed back to the day I met her and it became so clear! I realized in that moment just as my parents would have (in all their wisdom) all those years ago, that this was a true friendship.

From then on we were inseparable, us and our other amigo, Carlene. You know, I’ve never really been much for fate, but how awesome is it that all three of our names start with the same letter! It totally does not get any better than that J

Back to the story! The more Courtney shared with me about NF; the more I wanted to be involved. I remember another time; she had an MRI appointment booked. I know it sounds crazy, but when she texted asking for a ride I was so excited! I finally would have gotten to be a part of her journey and experience it alongside her. Rather than her telling another story, I would be there, and I would be part of it. Turns out, her mom was able to take her to the hospital and we met up afterwards. I was a little disappointed, but I recognized something. I am in a special position as one of her best friends, because although I was not there when she experienced her most significant struggles like Carlene was (who has been Courtney’s friend for 15 years), I know her now and I have seen just how beautifully she has overcome them.

Some of my best days this year were spent with Courtney, her mom Tracey, and Carlene at the inaugural Manitoba Neurofibromatosis (MBNF) Empowerment Symposium in Winnipeg. The event happened in October 2015, where as most of you know, Courtney was a keynote speaker!

There was much anticipation leading up to the event’s arrival, as Carlene and I surprised Courtney for her 21st birthday months earlier! We created an elaborate scavenger hunt and drove her all over Red Deer to find several clues. Where at the end of the hunt, she discovered we would be joining her. That was a pretty special day, but nothing topped the symposium. I was finally going to be part of her journey!

Courtney read us rough drafts of her speech, which were all amazing by the way. But her final copy was a surprise for us, as Carlene and myself both decided we wanted to hear it for the first time at the symposium, just as those in attendance would. I often thought about how great her speech would be, and the expectations I had were exceeded on so many levels! I can’t even begin to express to you how proud I felt, sitting in that front row, while she so confidently shared her story. And I was just so excited for her! She finally was able to accomplish what she always told me she wanted to: empowering others affected by NF and raising awareness of what it is like to live with this condition. After her speech was finished, I sat beside her in awe, as there was a line-up of people wanting to talk with her and say thank you for sharing her experiences. I tried my best to hide it, but I was crying. Tears of joy. Even while writing this post, I am tearing up! She touched so many people, again, with that heart of gold, I tell you. Myself included. Her courage and grace is simply astonishing. I tell her to this day how much of a hero she is to me, and as the humble individual she is, she always says, “no way.” But that’s what she is to me. She’s my best friend and my hero. There are not many people who can say they have accomplished what she has at her age.

But what I’ve learned from Courtney is, you don’t have to be famous and well known to be a hero. I am a hero every day that I put my scrubs on and go to work. That person who pulls their car to the side of the road to ensure the little old lady walking across the street, does so safely, is a hero. The person who stands up for themselves and what they believe in, against all odds is a hero. We are all heroes in our own way and we should be proud of that. Heroes also show humility. Courtney wanted to share her story, not to receive any form of recognition but to simply let others know, she has struggled as they have, she has felt pain and darkness, and she has risen. Risen above and become something beautiful. And you can too. An illness or any kind of suffering is part of who we are, but it is not what we are! We cannot choose but happens to us, but we can choose how we respond. It does take time, as it did with Courtney, but with bravery, self-acceptance and the support and love of others, we can accomplish more than we would ever know.  

I leave you with this. If you ever are so lucky as to find true friendship, as I have with Courtney, hang on to it so tightly, because I promise you, it will be the best thing you ever do!

- Casey