Monday, December 8, 2014

Neurofibromatosis Type 2

Since my blog has primarily been focused on Neurofibromatosis Type-1, I wanted to provide some information about NF-2! Some of the medical information that I found was really complicated, so I tried to simplify it the best I could!

Neurofibromatosis is classified into 3 different types:

1. Neurofibromatosis Type 1 (which is what I have been diagnosed with and what this blog focuses on)
2. Neurofibromatosis Type 2 (which is what this blog post will focus on)
3. Schwannomatosis

Neurofibromatosis Type 2 is much more rare than NF-1, as it occurs 1 in 25,000 people instead of 1 in 3,000. The trademark symptom of NF-2 is tumor growth on the 8th cranial nerve (there are 12 cranial nerves), which is responsible for providing the brain with information relating to balance as well as a sense of sound or hearing. This means that individuals with NF-2 are at a much higher risk for deafness and severe balance problems than those with NF-1 or even those in the general population.

Like people with NF-1, individuals who have Neurofibromatosis Type 2 can develop tumors on other nerves in the body.  These tumors are called schwannomas because they typically develop from Schwann cells, which serve to insulate and protect nerve cells so that they can conduct information throughout the brain. Neurofibromatosis Type 2 can also cause vision problems, such as cataracts, orbital tumors and abnormalities of the retina. Facial weakness is another common symptom of NF-2, as are headaches and subcutaneous tumors. People with this type of NF can also have symptoms of NF-1 such as cafe-au-lait spots, but they typically have only a few of these.

Unlike NF-1 which tends to manifest in early childhood, symptoms of NF-2 are generally not noticed until the later teen years or early 20's. The diagnostic criteria is also quite different than that of NF-1, the criteria is as follows:

A diagnosis if NF-2 requires that the patient presents with at least 1 of the following:

  • Bilateral vestibular schwannomas (tumors of the 8th cranial nerve present on both sides of the brain) 
  • A first degree relative with NF-2 (parent, sibling or child) AND|
  • Unilateral vestibular schwannoma (tumor of the 8th cranial nerve found on only one side of the brain) OR
  • Any 2 of the following: meninginoma (a benign tumor that comes from tissues in the brain), schwannoma, glioma (a malignant or benign tumor of the glial tissue of the nervous system), neurofibroma, and subcapsular lenticular opacities (cataracts)  

  • Multiple meninginomas AND Unilateral vestibular schwannoma OR 
  • Any 2 of: schwannoma, glioma, neurofibroma, cataracts

I hope you all learned something new today, enjoy your week!



Monday, December 1, 2014

My Journey to the Mayo!

Well hello there! Thank you to everyone who has been reading this blog weekly, and thank you to those of you who are reading one of my posts for the very first time! I am very blessed to have so many people in my life who care about me, so here is a big shout out to my lovely friends and family!!! I would also like to extend a thank you to Manitoba NF for making me their "official blogger" and allowing me to share my journey in a meaningful way! So here is this weeks edition:

For those of you who live in Canada, I am sure you are as frustrated as I am about finding a physician who is well educated on NF. For those of you who live elsewhere, check out my previous post "NF Awareness in Canada"so you can have a feel of what it is like way up north with all the polar bears and igloo'

After 3 years of having NO success with finding the origin of my headaches, and exhausting the medical system in Canada, my family and I knew we needed to try something different. There is so little knowledge of NF in Canada, and I felt like something may have been getting missed because of it. I was very blessed to have been given the opportunity to travel to the Mayo Clinic in Rochester Minnesota in June of 2011. Not really knowing what to expect, my Mom and I packed our bags and boarded a flight to Minnesota. We were welcomed by a blast of horribly humid air, and we were told that apparently Rochester hadn't experienced a heat wave this bad in like 20 years. And here my Mom and I were with our toques and parka's, sweating like crazy.... Haha I'm totally kidding. But we did seriously get asked if we lived in an igloo....

We weren't really sure how long we were going to be down there, it depended on what happened with all of my doctor's appointments and what they "found". I saw a total of 7 specialists at the Mayo, ranging from pediatric endocrinology to a geneticist who specialized in NF... SCORE! It was actually pretty great having a doctor who knew so much about NF, as majority of the specialists I have up here didn't have any other patients with this disorder. Many of them actually had never even treated anyone with Neurofibromatosis before, which was always very frustrating for me.

My Mom and I were down in Minnesota for 9 days, and in that time I had a full body MRI, multiple blood tests, X-Rays, and other specialized tests to see if any of my NF symptoms were "treatable". Mostly, I just wanted an answer for the chronic headaches that I had been experiencing for 4 years. I saw 2 neurologists, who both couldn't give me an answer for why I had headaches. Actually, one "kind of" gave me an answer.... I had been asked to keep a headache journal, so that they could see if there were any cyclical patterns to my headaches, When I gave this journal to the first neurologist, he snorted and said "You're such a Type A personality, and that's probably why you have headaches. You're just a typical migrainer" as he tossed the headache journal back at me. I was pretty mortified. Who was he to tell me that my headaches were due to my alleged "Type A" personality? He had absolutely no idea what I had been through, because he didn't take the time to ask me. He just assumed. This bothered my Mom and I so much that we actually asked to see a different neurologist and get another opinion because of the way that I was treated. This second neurologist way was absolutely awesome, which goes to show that you really do have to advocate for your own care!

At the end of the trip, there were no new "answers" for why I had chronic headaches other than " is just part of having NF."It was a general consensus among the physicians that since I randomly woke up one day with the headaches, that randomly one day I will wake up with no headaches.  At first, that was really tough for me to take in, as I felt like I had completely wasted 9 days to learn nothing new. After a lot of thinking and reflecting however, I realized that being told what I was told brought me a lot of peace. It made me realize that I had really gone as far as I could to find answers to why I had chronic headaches. It made me realize that I really did access all the resources that were available to me, and did everything I could in my power to find an answer. I got to see some of the best specialists in the world, and if that can't bring a person peace, I don't know what will.

If you want to learn more about my trip to the Mayo, I did keep a blog while I was down there, and here is the link if you want to check it out!

Thanks for reading,


Monday, November 24, 2014

Learning Disabilities Associated with NF

Due to popular demand, here is a post about learning disabilities and Neurofibromatosis!

Neurofibromatosis is one of the most common genetic disorders affecting the nervous system. It's major manifestations are physical, but as many as 60% of individuals living with this condition have a learning disability. I am referring to children throughout the post, but these disabilities also impact adults.

Learning disabilities range in type and severity among children with NF. It is estimated that 40-60% of children with NF have ADD (Attention Deficit Disorder) or ADHD (Attention Deficit Hyperactive Disorder). Although the cause is not certain, it is thought that ADD/ADHD originates from structural and functional problems in the brain, which affects how certain parts of the brain are connected to one another. Research also hypothesizes that children who have a low birth weight are prone to developing ADHD, as well as individuals who have brain damage to the temporal lobe (the lobe on the "side" of your brain). Certain parts of the brain are smaller in children who have ADHD, and the neurons in their brains that are supposed to transmit information seem to fire at a much faster rate, than in people without ADHD. There also seems to be a deficiency in the neurotransmitter dopamine, which plays a role in behaviour, cognition, and attention. According to the NF Network, children who have ADD or ADHD tend to have behavioral issues such as restlessness, impulsivity, and are easily distracted. Typically, it manifests itself around the age of 12 years, but it is not uncommon for people to be diagnosed during adulthood.

There are a variety of learning problems that can be seen in children with Neurofibromatosis. Some of these children tend to have more difficulties with math and numbers, while others struggle with things like reading, comprehension and problem solving. Specific learning problems that can be seen include:

1. Mathematic Difficulties
  • Found in 60% of people living with NF 
  • People with NF can have difficulties remembering basic numerical facts
  • A lot of people may require continual concrete aids such as counting on their fingers
  • A lot of people with NF are impulsive, and may misread math equations or signs 
  • Individuals who have difficulties with reading may also struggle with math, as math tends to have its own "language"
2.  Language Difficulties 
  • Individuals can have difficulties expressing themselves 
  • Individuals who have difficulties with language often have problems with attention span
  • Research has shown that children with NF can have difficulties with language in the following areas: 
a) Receptive language -- the ability to process the written and/or spoken language. Individuals who struggle with receptive language have difficulties with:
  • Following directions and instructions
  • Discriminating between sounds 
  • Understanding the meaning and content of speech 
b) Expressive language -- the ability to express meaning via writing and/or speaking 

3. Reading Difficulties 
  • Dyslexia is common in children with NF ( We pegin our qrib eq a faziliar blace, a pogy like yours enq zine. Iq conqains a hunqraq grillion calls qheq work qogaqhys py gasig... Can you read that? Click this link for a translation... this is how children with dyslexia can see words on a page    ( )
  • People with NF often struggle with sounding out words, which is known as phonological dyslexia. Also, individuals who have phonological dyslexia also have difficulties spelling words

That's all I have for you guys this week, thanks for reading and I hope you have learned something new!!!


Information was gathered from:  

Monday, November 17, 2014

Rare and Unique NF Complications

Thanks to everyone who participated in my pre-post discussion! For those of you who want to participate in conversations about Neurofibromatosis, like the "MBNF, Manitoba Neurofibromatosis Support Group" on Facebook!

It really wasn't until I decided to write this blog post that I realized that I didn't like the word "rare". I mean in some cases its great, like "Hey I have a rare coin from the 1800's that's worth a lot of money", then sure, rare is a great word to use! But when it comes to medicine and complications from different illnesses, "rare" isn't such a great word. To me, it almost alienates people. It puts a label on them and makes them appear different from everyone else. I mean, a lot of people already struggle with being "different" because of their diagnosis of Neurofibromatosis, so why further alienate them from normalcy? Why place an unneeded label on someone who is just trying to find a place to fit in? So throughout this post you will see me use the word "unique" instead of rare, and maybe we can start changing some of our language!

Like all other illnesses, Neurofibromatosis has a set of  unique complications. My Mom and I always used to laugh at how I was the exception to every rule, and how majority of the complications I have are unique, which at times can be very frustrating. So here, I'm going to explore some of these complications with you! Keep in mind that these occur in less than 1% of people living with NF:

1. Early or Late Onset Puberty -- there really is no known cause for this complication at this point in time. Typically changes in hormones such as in puberty and in menopause can cause either changes in your current tumors, or cause new tumors to develop. Therefore, current research indicates that the growth of neurofibromas could be due to hormonal changes and imbalances.
In terms of my own health, I had to deal with extremely late onset of puberty. While everyone was going through puberty between the ages of 10-16,  I didn't hit that stage until I was almost 18 years old, which actually was a very stressful process for me.

2. Epilepsy -- generally, epilepsy in Neurofibromatosis occurs secondary to a brain tumor. Epilepsy seems to be able to be well controlled with medication, and usually  people with NF have a mild cases. Statistically speaking, partial onset seizures (seizures that impact only one hemisphere of the brain) are the most common type of seizure seen in NF patients.   

3. Malignant Peripheral Nerve Sheath Tumors -- these tumors arise from the peripheral nerves or from cells associated with the nerve sheath (such as Schwann cells and fibroblasts). The cause of this kind of tumor is unknown. These tumors are cancerous, and often require treatments such as radiation and chemotherapy.

4. Brain Tumors (other than optic glioma)-- one of the trademark symptoms of Neurofibromatosis are tumors of the optic nerves (optic gliomas). In some cases, optic gliomas can cause involuntary eyeball movement, and sometimes blindness. It is generally recommended that children are observed yearly by an ophthalmologist who performs tests that can screen for these types of tumors. Any other kind of tumor in the brain is unique!
When I was 13 years old,  I was diagnosed with a benign astrocytoma of the hypothalmic/pituitary region. Astrocytomas are tumors that arise from astrocytes, which are star-shaped cells that make up the "glue-like" supportive tissue of the brain. The hypothamic/pituiary region of the brain, is located right in the middle of the brain (think of a pit in a peach, that is where the tumor is), thereby making the tumor inoperable. Thankfully, my tumor hasn't grown in over 7 years!

5. Severe Mental Retardation -- this is one of the most severe behavioural and cognitive abnormality seen in Neurofibromatosis. Although it is common for individuals with NF to have learning disabilities, it is very uncommon that they are seriously impacted. This is usually evident in the first few years of a child's life.

6. Hormonal Complications -- hormonal conditions related to NF are typically a complication of a brain tumor, but research has also showed that individuals born with NF who do not have brain tumors brain tumors can still suffer from a variety of different hormonal conditions. This is something that is still being researched...
I was diagnosed with hypopituitarism in 2010, which funny enough is extremely uncommon worldwide (not just in NF). Basically, this  means my body doesn't make nearly enough hormones. The hormones that have been impacted the most since my diagnosis are:  growth hormone, cortisol, estrogen, progesterone, and prolactin.

7. Problems with Growth (too short or too tall) -- once again, there is no definitive cause for problems with growth in individuals living with Neurofibromatosis. Sometimes, the brain makes too much growth hormone, which results in a child being overly tall, and it can also lead to the brain not making enough, thus resulting in an abnormally short stature. If caught in time, children who are growth hormone deficient can be given growth hormone injections to stimulate their growth, while children who make too much of this hormone typically have to undergo surgery.
Along with the hypopituitarism, I was diagnosed with growth hormone deficiency in 2010. However, since my growth plates had shut a year or so before the diagnosis, I was not a candidate to receive growth hormone injections to stimulate growth.

8. Stroke -- in Neurofibromatosis, stroke is most often caused by blockages in the blood vessels going to the brain, leading to a reduction or complete blockage of blood to the brain.

Well, I hope everyone has a wonderful week! Thanks for tuning in!


Resources Used: 

Monday, November 10, 2014

NF Awareness in Canada

Imagine walking into a doctors office with a common cold, but nobody has heard of it before. Or imagine going to your doctor with a suspicious looking mole, and having him tell you that he has never treated a patient with a mole before. Imagine having a trained medical professional, who is "supposed to know everything" look at you and say you're fine when you're clearly not. This is what many individuals living with Neurofibromatosis face on a regular basis. I'm sure many of you who live in Canada know how incredibly difficult it is to find a doctor who is well educated on Neurofibromatosis...almost impossible. One thing that always baffles me is how could there be so little knowledge revolving around a genetic disorder that has a prevalence rate of 1 in 3000!

I have been extremely lucky over the past 9 years to have had absolutely wonderful doctors taking care of me, and I attribute much of their work to where I am today. I have been cared for from specialists such as pediatric neurosurgeons to pediatric endocrinologists, orthopedic surgeons and pretty much everything in between. Although I have had stellar care, most of these specialists had either never heard of my condition or had never treated someone with it before in their practice.

I clearly remember the first time I saw a neurosurgeon at the Stollery Children's Hospital. When my neurosurgeon walked through the door the first time, I had an eerily calm feeling sweep over me, as I knew I was in capable hands. It wasn't until the middle of the appointment that I asked him "so, how many other patient's do you have with Neurofibromatosis?" thinking he would say he maybe had a dozen or so. He looked at me, frowned and said "You're the only one. I've never treated anyone with that condition before". I could feel my heart starting to beat a little faster as anxiety began to set in. Certainly this was all new to me, and I was slightly horrified to find out that this would be new to him as well. I kept asking myself where all of these other patients were hiding, because I knew they were out there somewhere!

This trend continued with majority of the other doctor's and specialists I saw over the years. Out of the THIRTY FOUR I've seen since I was born, I think it would be safe to say that maybe 8 have cared for someone with NF before, and majority of those 8 were doctors were at the Mayo Clinic in the USA. I was even asked what Neurofibromatosis was once...seriously...

Ultimately the point I'm trying to make is that we need to raise awareness for NF, and allow people like myself to fight this illness knowing our physicians are well educated on the disorder here in Canada. NF deserves to be featured on the news, on the front pages of newspapers and have articles in magazines. People like myself shouldn't have to hope that the medical professional they are seeking out is educated on Neurofibromatosis, we should be confident and know that they are educated. We need to raise awareness, because people with NF deserve the chance to fight this disorder. It's not fair for us to always be the teachers and educators on this illness while seeking medical advice. I don't have any issues with teaching other people about NF, but we shouldn't have to educate the medical community. We deserve to have our voices heard!

Thanks for reading everyone!!


Friday, October 31, 2014

Cardiac Issues Related to NF

Neurofibromatosis doesn't favour any part of the body. It doesn't favour any body systems, it doesn't favour any organs. It attacks the brain, spinal cord, integumentary system, lungs, bones, eyes... you name it, and NF will likely wreak havoc there. Ask anyone who has NF, and they will likely tell you that their condition affects more than one bodily system. Cardiac issues however, appear to be under reported in individuals diagnosed with Neurofibromatosis.

Recently I have  been dealing with chronic sinus tachycardia (a heartbeat that is too fast), hypertension, and a Grade 1-2 heart murmur. When these problems were first detected, doctors were actually very worried about these newly developed symptoms. The part of my brain where my tumor is located, controls and regulates the body's blood pressure. Seen as how my blood pressure spontaneously went up in a matter of a few weeks, they were very concerned that the tumor was growing. My blood pressure typically sat around 105/75, so when it shot up to 140/82 and my pulse was sky high at 112, there was definitely a reason to be concerned. 

My MRI got bumped up several months (I only had to wait 2.5 instead of 6), I went for an ECG as well as an echocardiogram to see if they could find any physiological reasons for the change in my cardiac status. Nothing showed up on those tests that were too serious, but something did show up on the MRI. I was shocked when I heard the news. My brain tumor was.... SHRINKING! Over the years it has been decreasing in size, but the amount of relief I felt when I found out the tumor had not grown was immense! SUCH A RELIEF! 

I just completed a 24 hour period of wearing a holter monitor about a month ago, which consisted of 5 cardiac leads that were placed on my chest to monitor my heart rate. The results came back normal, which means my diagnosis is chronic idiopathic sinus tachycardia. Sounds complicated eh? It just means that my heart beats too fast and they don't know why. Luckily, as of right now they don't need to do anything about it. If I start having more complications such as chest pain and shortness of breath then I may need to be put on medication and I will need to be monitored closely.

Here are some facts for you about cardiac issues related to NF :)   

  • Neurofibromas can grow inside of the heart and the cardiac chambers, which obstructs blood flow in the heart as well as in the major vessels 
  • Higher rates of mycardial infarctions (heart attack) and cerebrovascular accidents (stroke) occur in individuals with NF 
  • Hypertension is frequently associated with NF (15%)
  • Cardiac complications can lead to a life expectancy of 17 years less than that of someone without NF (in severe cases)
  • NF 1 can cause cardiac vasculopathy (inflammation and destruction of blood vessels)
  •  Pulmonic stenosis is when one of the valves in the heart (the pulmonary valve) is narrowed. This causes blood to flow to the lungs instead of the heart. This complication is usually present at birth. 
In children, cardiac complications associated with NF are most often diagnosed when the child experiences spontaneous headaches, seizures, weakness and involuntary movements of the body . Adults tend to present with similar complications, but  hemorrhaging in the brain may also be the culprit. 

So I hope you all learned something new today! I know I did when I read all of this! Thank you for reading!


By the way, please comment on my posts and let me know what you would like to learn about NF or any stories you would like to hear from me! I'm open to sharing most of my experiences. 

Journal Article Reference: 

Friedman, J. M., Arbiser, J., Epstein, J. A., Gutmann, D. H., Huot, S. J., Lin, A. E., Mcmanus, B., Korf, B. R. (2002). Cardiovascular disease in neurofibromatosis 1: Report of the NF1 cardiovascular task force. Genetics in Medicine. Retrieved from

Friday, October 24, 2014

A Post From Reggie Bibbs

Hey everyone! I really wanted to try something different this week, so I asked my dear friend Reggie Bibbs to write something about his journey in the NF world. Now, I told him that he could write about any experience that he has had throughout his lifetime, and I was honored and humbled when he sent me this article about meeting me and my Mom. I'm sure most of you have read my previous post about my experience meeting Reggie Bibbs (and if you haven't please do), so this came as a huge surprise to me. It truly is amazing how one interaction with one person can change someone's life forever. So please take the time to read this and comment either below or on Facebook, because Reggie took a lot of time out of his day to do this for me. Enjoy!

I was excited about my second opportunity for a return trip to Canada. I was excited, but still nervous.  Plans were being made, and I was trying to keep it under wraps until it is almost time to go.  Courtney and I had just learned of each other. Courtney ordered a few Just Ask shirts. It was slow arriving. But we kept in contact. They final arrived. Courtney learned that I would be there. She would post how happy she was, that we would meet at the NF Symposium. I was just as happy. I had not seen a photo of Courtney, I wouldn't know who she was until she introduced her self to me.

We arrived in Canada, and got settled in. It was time to go out and get a meal. Just as we were leaving out of the room. My room door closed and we started walking down the hall. I see Courtney and her Mom, who I  had never seen before that day. Courtney and her mom stopped in their tracks, Courtney dropped her bag, and screamed, "Oh my God!" Panic set in, I stopped and stood as close as I could to my friend who was with me. I was thinking I scared someone. Then Courtney said, "I can't believe it, it's you. Reggie Bibbs!!" Relief sat in as Courtney ran over and gave me the biggest hug one could ask for.  Tracey, Courtney's mom came over, but was quite calm, but also gave me a hug as well. Tracey said "You'll have to excuse my daughter she is a little excite about meeting you." Well, meeting Courtney and her Mom will never be forgotten. I remember it like it was today. I'm the blessed one to have met Courtney and her mom. Thank you for what you have done for me.

-- Reggie Bibbs

Thanks for reading this "special edition",


Friday, October 17, 2014

NF and Chronic Pain

One of the predominant symptoms of Neurofibromatosis is chronic pain. This pain develops as neurofibromas grow, compress nerves and/or puts pressure onto adjacent nerve tissue. Pain can also come from bony abnormalities such as scoliosis and tibial dysplasia... the list is honestly endless.

I would put money on it that you could ask anyone living with Neurofibromatosis if they have dealt with some kind of chronic pain at some point in their life and they would say yes. Me included. 

It all started with a headache actually. And I clearly remember that first day of having this damn headache. I came home from volunteering at the hospital and had this throbbing, stabbing pain radiating across my head, spanning ear to ear. I went right to the medicine cabinet and took some Advil, and thankfully it went away. I woke up the next morning, with another headache. Same spot. I took another Advil, and the pain went away. I went through this cycle for a solid few weeks, until one day the Advil didn't work. That day turned into a week. That week, into two weeks. Two weeks into three, I think you kinda get the picture. 

Since I was just diagnosed with a brain tumor, I automatically thought that the tumor was the culprit. The damn thing. I went to my family doctor and he referred me to a pediatric neurosurgeon in Edmonton, and the idea of me needing brain surgery got really real. 

After a few appointments with these brain guru's at the Stollery, it was determined that the area of the brain where my tumor is does not have the capability of feeling pain. So if the tumor wasn't the culprit, so what was? At that point in time, it could have been a number of different things, hormonal imbalances, increased intracranial pressure, problems with my eyes, skeletal abnormalities....

So I pretty much got tested for everything underneath the sun. I was poked so many times I could probably preform a blood test on myself or do a full neurological workup in my sleep... seriously. I saw 6 neurosurgeons and 4 neurologists and nobody knew the origin of these headaches (which were occurring all day every day at this point)

I was on 6 different medications, endured chiropractic and massage therapy, physiotherapy, craniosacral therapy and allergy testing. I also had a spinal tap, tried IV medication, medicinal botox, cut gluten out of my diet, endured acupuncture and even went as far as going to the Mayo Clinic in Rochester Minnesota.  

Unfortunately nothing worked to get rid of my headaches, but I have been able to find ways to cope with my pain over the years, I tend to keep myself really busy, and I find by doing that, my mind is occupied with things other than my headaches. Sometimes taking something like ibuprofen will take the edge off of a particularly nasty headache, but I honestly haven't had a day in over 8 years that was headache free. My doctors think that since I woke up with a headache spontaneously one day, that I will wake up spontaneously one day without one. I am certainly looking forward to that day!!!

So the point behind this post is that sometimes you need to try multiple interventions to treat chronic pain, don't give up after only trying a few things! Keep looking and hopefully at some point in time you will find something that will work for you!!

Thanks for reading,


Friday, October 10, 2014

Reggie Bibbs -- A Modern Day Hero

When I was 16, I was halfway down a dark road, and it felt like there was no turning back for me. I was trapped. I couldn't seem to see any kind of light at the end of the tunnel.

I remember the day that would lead to my life being changed... forever. My Mom and I had just seen a documentary on TLC about Neurofibromatosis, and you guessed it, Reggie Bibbs was the star! I was amazed at this mans courage, his resiliency, his passion. I admired his honesty and his desire to change the face of NF. She later came to me one night, and handed me a piece of paper as she said "This will change your life Courtney Anne!" I stared at the piece of paper with a blank look on my face. How was this paper going to change my life? It's a piece of paper! However, after I read through it, I started to see a hint of light at the end of that dark road.

There was going to be an NF symposium in Calgary, and Reggie Bibbs was going to be the guest speaker! I had never met another individual who was living with NF, so this was going to be a very special experience for me. I was very anxious, I didn't necessarily want to share my story, I didn't still didn't want people to know. I didn't want to talk to too many people. I simply went because I wanted to feel like I belonged somewhere (and my Mom promised to take me shopping!)

I remember arriving at the hotel just like it was yesterday. I had a whole lot of mixed feelings. I was excited however by the fact that there were at least 50 other individuals in that hotel that share the same genetic abnormality that I had. It was comforting. I finally would have people to talk to that would understand me and the fears and ambiguity that I was dealing with on a day to day basis. I was starting to see more light at the end of that dark road.

My Mom and I were anxious to head up to our room to unpack, and as we were traveling up the elevator I said "Wouldn't it be cool if Reggie Bibbs was on the same hotel floor as us?!?" My Mom and I both agreed that it would be pretty cool, but highly doubted we would get anywhere near him until tomorrow's symposium. Boy were we wrong!

As we walked down the hall, someone's door opened and two people stepped out of the room. I. Was. Shocked. It was Reggie Bibbs! I must have stared for what seemed like hours, because I could tell he was uncomfortable with my rather intense gaze. Then I realized what I was doing. Reggie didn't know me or my story. He didn't know that I knew who he was. So what did I do? The only thing that seemed to be logical at the time. I screamed his name and ran down the hall and threw my arms around him. That light at the end of the road now? It got a little brighter at that exact moment.

Reggie, my Mom, and myself shared a few moments of time with each other before heading our separate ways, but we promised to meet up sometime the next day at the symposium. The excitement was mounting as the night stretched on and it seemed like forever until tomorrow finally came.

 The speech Reggie delivered during the symposium that next day is what changed my life. Saved my life rather. I learned more in a mere 15 minutes of him talking, than I had tried to teach myself in the 3 years leading up to this. I learned that it was okay for me to be different. It made me who I was, and regardless of how much I wanted to change it, I would never be able to get rid of my condition. I was unfortunately going to have to deal with tumors, chronic pain, and ambiguity for the duration of my life, but Reggie taught me that I still needed to live. I had lost the meaning of life before that symposium, I was angry, and mad, and upset that I was given the short straw and put through hell. But Reggie Bibbs, you turned that short straw into something unstoppable!

So now looking down that road that was so dark before? All I could see was light!


Friday, September 19, 2014

Stigma Behind Mental Illness

What are the first words that comes to your mind when you hear the words “mental illness”?! Crazy? Insane? Pyscho? Looney? Or do words like "ill", "neglected" and "stereotyped" come to your mind? Would you be surprised if I told you that 1 in 5 Canadian adults will be diagnosed with some kind of mental illness in their lifetime?

Mental illness almost seems to be a taboo topic, something that people keep on the down-low. But why? People talk about cancer all of the time, people talk about autism and cycstic fibrosis, but why not mental illness? Mental illness has physiological origins, and therefore it is out of the person's realm of control, they can't control it. They didn't ask to be sick. They didn't do anything wrong. So why are we giving mental health the cold shoulder? Why can't we talk about it?

Almost 50% of individuals with Neurofibromatosis are diagnosed with some form of depression throughout their lifetime. Feelings of helplessness in conjunction with loss of control can be extremely debilitating for people. Anxiety about appearance and fear of being ostracized are completely legitimate problems for people facing a variable illness such as NF. Having an unpredictable illness can be terrifying, and slowly those fears can take a toll on one's body. How do I know this? I went through it 6 years ago.

I was never officially diagnosed with depression, but it wouldn't take a psychologist to diagnose me. I sucked the happiness out of the room. Seriously. I withdrew from most of my social activities, I didn't want to spend time with friends on the weekend. I spent a lot of time sleeping, and when I wasn't sleeping I spent time by myself (usually in my room). I didn't do things that made me happy anymore, because what was the point? I felt like a burden on my family because I was constantly going to medical appointments and missing school because I wasn't feeling well. My whole world felt like it was encased in a black tarp, and I was fighting to search for a way out... I just didn't know how to do it.

I was eventually prescribed an antidepressant, but until recently I never referred to is as that. Is was always a "mood stabilizer". I was afraid of the stigma that would be placed upon me if people knew I was fighting depression, but now I realize that it is NOT my fault. And anyway's, why should I care what people think, I am happy now aren't I?

I use to feel like the 3 years I spent in a depressive state were cruelly taken away from me. I felt like I was robbed from the feeling of happiness. But as I've gotten older and learned more about myself, I feel like those 3 years were almost a blessing. I was truly able to learn who I was, what I believed in, and it made me realize how lucky I am. Yes, I have an extensive and complicated medical background, but I fought for 3 years to stay alive. At the end of the all I found out that I am a fighter.

I am happy to report that today, I am doing so much better in terms of my mental health, I am still taking my medication, but as long as it is helping me I plan to stay on it. Why change a good thing, right?! And please, if you or a loved one is fighting a mental illness in silence, SPEAK UP! We need to break the stigma mental health has, and make it a priority in health education.

Thanks for reading!
Courtney =) 

    Signs and Symptoms of Depression:

  • Feelings of helplessness and hopelessness
  • Loss of interest in daily activities
  • Sleep changes (both insomnia and hypersomnia) 
  • Concentration problems
  • Unexplained aches and pains 
  • Anger and/or irritability 

  • Friday, September 12, 2014


    I want to be the first one to thank you for clicking that link to read my blog.... RIGHT ON! I thought I should probably introduce myself, so here we go!

    My name is Courtney Willoughby, I am 20 years old and am living with Neurofibromatosis Type 1. What's that you ask? Well check out the other page on this blog to learn more about it!

    I was diagnosed with NF when I was 3 years old. There is no family history of it in my family, so you can only imagine how shocked and terrified my parents were when I was diagnosed. Growing up, I really never experienced many difficulties with NF, I met all of the major developmental milestones and was excelling in my studies at school. It wasn't until I was 13 that I truly entered my journey into this whole NF business.

    I had a plexiform neurofibroma removed off of my back the summer before I started Grade 8, which was an extremely painful procedure and recovery. At this point in time, I had never had an MRI of my brain, so my pediatrician decided it would be a good idea to have one done to use as a "baseline" reference. Being only 13, I was absolutely terrified. I was terrified that something would show up on the scan. I was terrified I was going to have a nasty brain tumor that would be cancerous. I was terrified that I was going to need brain surgery. After the day of my scan, I anxiously waited for the test results. I will never forget the day that my doctor sat me down and delivered the news. I had a brain tumor. It was inoperable. It truly felt like I had the wind knocked out of me. I couldn't breathe. I kept asking myself "Why? Why me?". I truly thought my life was over, my heart was broken. My doctor told me that we would need to keep a close eye on the tumor to make sure it wasn't growing. I went home with my Mom that day as a completely different person.

    After that diagnosis, I started having extremely horrible back pain, and I was soon diagnosed with scoliosis. After that, I started having headaches every day of the week (after seeing over 6 neurologists and 4 neurosurgeons, I still have headaches every single day!) Over the next few years my diagnoses included: hypopituitarism (a rare hormonal condition), growth hormone deficiency, an undiagnosed hormonal condition, overactive bladder, mesodermal dysplasia (ribbon rib deformity),  hypertension, chronic sinus tachycardia, grade 1-2 heart murmur and multiple tumors in my leg, arm, auditory canal and pelvis.

    The fact that I am sharing this with you right now is a miracle. There was once a time in my life that NOBODY knew of my condition. It was my little secret. I didn't want people to know because I didn't want to be labeled a "freak". I didn't want to be ostracized or treated different than my peers. I hid everything, and it eventually took a serious toll on my health. I developed depression and a severe eating disorder. I was a mere 84 pounds at my lowest weight. This isn't something that is easy for me to admit, it's only been recently that I am able to talk about it. You see, I never was overweight or anything like that. I was actually always the scrawny kid in  class. The anorexia was all about control. I couldn't control my NF. I couldn't control the tumors growing in my body. I couldn't control anything it seemed like... but I could control what I ate.

    I stayed in this funk for a good 3 years, but everything changed when I had a once in a lifetime opportunity to meet Reggie Bibbs. If I told you the entire story you would probably be here for another solid half hour to read the rest of my journey, but I am going to keep it short and sweet. Reggie Bibbs saved my life. I was in such a dark place, with very scary thoughts running through my head. Reggie changed all of that for me. He made me realize that my life was worth living, and that NF didn't have to define who I was. Yes, it was part of me, but it didn't have to be all of me. Reggie gave me the courage to stand up for who I was, and who I wanted to be. And that is the reason that I am sitting here right now writing this blog post. Reggie Bibbs, you are an angel. I will be forever grateful for you!

    So what am I doing now you may ask? I am going into my third year of my Bachelor of Science in Nursing Degree! I am so close to being done I can almost taste it! Once I'm done, I want to be a pediatric nurse working on a medical surgical unit at the Stollery Children's Hospital. I want to care for children who are going through some kind of illness just like I was cared for. I want to give back.

    So thank you for reading this, if there is something that you would like to learn about, put it in the comments below. Thanks for reading =)