Tuesday, October 20, 2015

Manitoba Neurofibromatosis Symposium

My favourite quote from the symposium this weekend: "In order to love others we first need to love ourselves" - Reggie Bibbs 

This weekend I was given the incredible opportunity to attend (and speak at) the first Manitoba Neurofibromatosis Empowerment Symposium in Winnipeg. Saying I walked away feeling empowered in an understatement. The love, compassion and kindness of each and every person I met this weekend has left my heart full and yearning to dive deeper into the NF community. Listening to everyone's stories and getting to meet all the incredible people behind MBNF has left me awestruck at the strong sense of community that is present in our world of Neurofibromatosis. 

I have never before met majority of the individuals I had the luxury of meeting this weekend, but you can mark my word that I will never forget any of you. I feel so blessed that everyone in the NF community has accepted me with nothing but open arms, and I am bound and determined to continue spreading the word about Neurofibromatosis!

I hid from the NF world for so long, as I felt so safe in my own private world that I created for myself. I was afraid to share my story because I was terrified that people would judge and label me, and that frightened me to the very core. I used to hide from this community because I was afraid of being vulnerable, and I was afraid to be me. I thought I had to be a certain person to fit into society, which meant I had to hide all of my true thoughts, feelings, and beliefs.

 If someone would have told me 5 years ago that I would be a keynote speaker at an NF symposium I would have laughed and rolled my eyes.... yeah right, when pigs fly.... Now however, I've overcome so many of my fears and have learned to embrace myself for who I am, NF and all. At one point in my life I would have done absolutely anything to get rid of my condition, but now I've come to the realization that if I didn't have this disorder, then I wouldn't have some of the incredible people in my life that I have met through this incredible community. I no longer feel like I am my diagnosis... I am NOT NF. I am Courtney, who just so happens to have NF :) I could have let my diagnosis own me, however I chose to own my diagnosis. If I have one single message I want to share through my blog this is it:

Each and every person is put on this earth with different circumstances for a reason. None of us choose the life we've been given, or choose the events that occur in them, but we can choose how we react! Events, like a diagnosis, can destroy us or can give us the needed leverage to create change in our community. In the case of Neurofibromatosis, you can despise your health as much as you want, but stressing over it won't change any of your outcomes. What's going to happen is going to happen... it's inevitable. So why not embrace yourself (and all your beautiful imperfections) and live your life to your maximum potential?!

I do want to add something here before I sign off for the week...the symposium this weekend would not have happened without the dedicated, selfless individuals that have dedicated a large part of their lives to making a difference in the NF community. Please help me in thanking all of the directors and every other individual that invested their time in this event... I won't name you all because I might run out of room... you all know who you are!

Now, I challenge you all to SHARE this blog post to help me create more NF awareness, so more incredible events such as this one can take place in the future.... it only takes seconds to share this link. JUST DO IT!

- Court 

Monday, October 5, 2015


Majority of my journey revolving around Neurofibromatosis has to do with my chronic pain from daily chronic headaches. Can you believe I've seen approximately 32 physicians to try and figure out why I have such horrible headaches? Did you know that there are approximately 150 different types of headaches, making it extremely difficult in some cases to come up with a diagnosis?!

Unfortunately, I do not have the time nor the resources to discuss each type of headache, I decided I would cover 3 of the most common types.... so here we go!

1. Tension headaches (most common type)

  • Description: Tension headaches are frequently described as a mild to moderate pain that mimics the feeling of a tight band being squeezed around the head
  • Signs and Symptoms
    Dull, aching head pain
    - Tenderness to the neck, scalp and muscles of the shoulder
    - Sensation of pressure and/or tightness across the forehead or on the sides and back of your head
  • Cause(s): Although tension headaches are the most common type of headache seen, there is very little known about what causes them. Medical professionals used to think the cause was intense muscle contractions in the scalp, neck and face that resulted from environmental factors such as stress or muscle tension. There is currently lots of research being done to find the route of the cause!!!!
  • Trigger(s): Stress is the biggest trigger for this type of headache 
  • Treatment(s): Medications are typically one of the first-line treatments for this type of headache. Many different kinds of medications are used, ranging from over the counter drugs such as Advil. to narcotics like Percocet and in some cases specific antidepressants or anti-seizure medications can help control the pain. Remember to ALWAYS talk to your doctor before starting any medication regime! Some alternative therapies such as acupuncture or massage therapy can be utilized to manage pain.

2. Sinus headaches
  • Description: When you have a sinus headache, you may feel like there is a lot of pressure around your eyes, forehead and cheeks. 
  • Signs and Symptoms
    Worsening pain in your head if you bend down
    - Fatigue
    - Stuffy feeling in your nose
    ** tends to mimic a sinus infection**
  • Cause(s): Typically these kinds of headaches are caused by inflammation in the sinuses. Inflammation can be caused by many different things.... it may be a chronic problem with no underlying cause or it could be caused by something like a sinus infection or allergic reaction
  • Trigger(s): There isn't a specific trigger that causes inflammation in the nasal passages, instead it is a combination of factors (discussed above in "causes") 
  • Treatment(s): Treatment for sinus headaches depends on the underlying cause. If the sinus headache is caused by an infection, then antibiotics are typically prescribed. Otherwise, over the counter medications like Advil and Motrin may work. 
** It's important to know that migraine and tension headaches are often misdiagnosed as sinus headaches... make sure you are confident in your doctors diagnosis before seeking treatment for a sinus headache! **

3. Migraine headaches

  • Description: Migraines can be some of the most debilitating kinds of headaches. A migraine is associated with an "intense" throbbing or pulsating sensation located in one area of the head. Some migraines are accompanied by something called an "aura", which can be things like seeing flashes of light, experiencing blind spots in vision, or a tingling sensation in the arms or legs  
  • Signs and Symptoms: People who experience migraines tend to have different signs and symptoms, however the following tend to be the most common:
    - Sensitivity to light, sound, and sometimes smells
    - Nausea and/or vomiting
    - Blurred vision
    - Feelings of lightheadedness, which may or may not be accompanied with fainting
  • Cause(s): Although migraines remain relatively not well understood, researchers believe that migraine headaches have genetic and environmental factors. it is estimated that a child has a 50% chance of developing migraines if one of their parents has a history of migraines, and a 70% chance of developing migraines if BOTH of their parents have them. It is also thought changes in brain chemicals may cause this type of headache. 
  • Trigger(s): Many triggers are associated with migraines, examples include: hormonal changes in women, foods and additives (like aspartame) in foods, alcohol, stress, changes in the environment (like the weather) and changes in sleep patterns (getting too much or not enough sleep)
  • Treatment(s): Unfortunately, there is no cure for migraine headaches. Like the other types of headaches discussed in this post, medications are the primary form of treatment. Effective medications include over the counter medications, anti-nausea medications, medications that have caffeine in them (these belong to a family called the "Ergots") and opioid medications that contain codeine 

Thanks for reading everyone! Remember, ALWAYS consult with your doctor before starting on any medication regime for your headaches. Many of the medications I mentioned are only available with a prescription and some can be dangerous when combined with other medications!