Monday, December 5, 2016

Alberta Tumour Foundation

Wow! What a month it has been! On November 12, the Alberta Tumour Foundation held its first event to raise awareness for Neurofibromatosis.

Never heard of the Alberta Tumour Foundation?! Well no fear, because I am here to tell you ALL about it! Myself, along with some other extremely incredible board members have created a not-for-profit organization in Alberta to support those living with Neurofibromatosis. Our goal is to provide support, awareness and advocacy to EVERYONE in Alberta, regardless of how NF has impacted their lives. Each individual on the board of directors has in some way or another been impacted by this condition, and we all have a deep desire to bring more education and light to the world of NF. 

On November 12 we made our bid debut as a group, and I am still in shock at the level of support the community gave us. We hosted a dance/social in Calgary, and had a silent auction, snacks, a bar and some pretty great laughs out on the dance floor (Scott, I contemplated posting your Gangman Style routine here!). I know this is the first time I've posted a thank you, and I've been holding off because I am still trying to process the incredible success we encountered that weekend. 

With the help of each person who bought a ticket, donated or purchased silent auction items, had some beverages at the bar and/or donated money out of the kindness of their hearts... you helped us raise over $7,800. Thank you, thank you, THANK YOU! 

Now, you all might be wondering what we might be doing with this money... and I am going to tell you!!! Each of us on the board of directors feel that social networking, bonding, and creating new relationships are extremely important concepts in the world of NF. I know I can speak for myself, that I used to think I was the only one living with this condition. I felt utterly, and completely alone. But you know what... I never was. There is an entire community out there of people living with NF, and once I immersed myself in that world, I started to flourish. We all deserve to feel like we're supported, and that is what ABTF wants to do! 

Right now we are in the process of planning another social event for next year, and at some point we've talked about hosting an educational symposium. We want to get medical professionals involved in our group, which we subsequently hope will bring more awareness into the health care system. 

There is so much we want to do with our group, and we are just starting out! The prospects of where this group can go is absolutely overwhelming! Be patient with us, as we are all learning what works and what does not work, but we do promise some awesome things coming your way in the years to come!

We are currently working on our website, but PLEASE make sure to check it out! And let us know what you think the NF community needs here in Alberta! 

- Court

Sunday, November 6, 2016

Invisibility of Mental Illness

Invisible illnesses are are not always obvious to onlookers. Chronic pain, sleep disorders, heart conditions and digestive disorders are all examples of invisible illnesses. But did you know, that mental illness also falls into this category?

When you think of someone battling depression or anxiety, what do you think of? Do you think of someone who can't get out of bed in the morning, or someone who can't hold down a job? Do you think of someone who struggles with relationships?

The media paints a pretty clear picture on what mental illness should look like. Apparently people with depression, anxiety, bipolar, or any other mental illness need to look and behave a certain way to be taken seriously.

Not long ago, I started taking antidepressants again. I had been on antidepressants since I was 15 years old, and went off of them about a year and a half ago to see how I could function on a day to day basis without the stabilizing effects of my medication. Long story short, it didn't end up entirely well, and I found out that my body just needs a little bit of extra help to stabilize my neurotransmitters.

With all of this going on, I've faced a lot of stigma and judgement from my peers, and even from complete strangers. I get people telling me things like:

"Courtney, you have so much going on in your life that is amazing! Be happy!"


"Smile Courtney! Your life is great!"

This bothers me. It actually irks me. Since when do positive life events automatically mean positive thoughts? Just because I have a stable job, supportive friends and family, and relatively stable health does not mean that I have all of my mental faculties in order. It does not mean that my hormones and neurotransmitters work they way they are supposed to. It does not mean that I am happy all of the time.

About a month ago I was at the pharmacy filling my prescription. The pharmacist got the medication together, told me about all the side effects, how to take it... all the pretty standard stuff. When she handed me the prescription she said:

"Now dear, we're just treating a tad bit of anxiety right? You're not depressed"

I was furious. I'm not depressed?! Seriously? How do you get to make that judgement from talking to me for maybe five minutes? Is it because I don't look depressed? Is it because I'm well dressed and seemingly put together? How could she make that judgement? I looked at her right in the eye and said:

"Um no. I actually have depression. This medication is to treat my depression."

See, the point I'm trying to make is that mental illness can be just as invisible as chronic pain. People can suffer silently from these mental illnesses that are actually extremely debilitating. You can't see depression. You can't see anxiety, or bipolar, or OCD. Sure, some of the behaviours that accompany these conditions are a dead giveaway, but by just looking at someone, you would never know.

So the next time you talk to someone who tells you they suffer from mental illness, take a step back and remember that people from all walks of life deal with this kind of stuff. All we're asking, is for a little bit of understanding. Mental illness already has such a stigma attached to it, that some people feel afraid to come forward because they feel like they don't fit the diagnosis. This. Is. Dangerous. Each and every person deserves fair and equal treatment, so whether or not they look the part, please start taking mental illness seriously. People won't come forward if they don't feel supported, and untreated mental illness can have catastrophic effects...

- Court

Monday, October 17, 2016

Attention Deficit Disorder (ADD) / Attention Deficit Hyperactivity Disorder (ADHD)

Did you know: That approximately 50% of children with Neurofibromatosis have ADD or ADHD, where in the general population approximately 3-5% of children have ADD/ADHD?

Now that you have that tidbit of information, here is some information for you all about Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD)!

Attention Deficit Disorder/ Attention Deficit Hyperactivity Disorder

What is it: A neurobehavioural disorder that makes it more difficult for children to control their behaviours and be able to pay attention. 

Causes: ADD and ADHD are caused by a decreased amount of special chemicals called neurotransmitters in the brain, specifically dopamine. Dopamine plays a role in things like movement, memory, behaviour and cognition, attention, mood and learning. Genetics are also thought to be a culprit in the cause of ADD/ADHD, as approximately 40% of children diagnosed with the condition have relatives with the same disorder. 

Signs and Symptoms: There are three main symptoms of ADD/ADHD:  

a) Focusing difficulties - children have a hard time focusing/staying focused on a task or activity they are trying to do

b) Hyperactive - when a child has an excessive amount of energy 

c) Impulsive - this is when children act before they consider what the consequences of their actions might be 

Other signs and symptoms that can arise from a diagnosis of ADD or ADHD are sleep problems (insomina), excessive amounts of daydreaming, decreased ability to perform in school due to inability to concentrate, inability to recognize other people's needs and difficulty regulating emotions. About 50% of children with ADD/ADHD will carry these complications with them into adulthood. 

When does it usually start: Usually the age of onset for ADD/ADHD is around the age of 7 years old. Diagnosing a child with ADD/ADHD can sometimes prove to be difficult as many children are often very active, day dreamers etc. However, it becomes apparent that a child does have a diagnosis of ADD/ADHD when two areas in their lives are seriously affected (school, home life, social life, etc). Boys are 3 times more likely to be diagnosed, but girls symptoms are typically just as severe as boys. 

Treatments/Interventions: Treatment depends on each and every individual, and is modified to meet the needs of the child. Typical treatments include medications, psychoeducation (educating the child/family on their condition), social skills training(helps kids learn to relate to one another), individualized psychotherapy and special supervision in school. Sometimes it helps for parents to get some education on ADD/ADHD or learn how to adapt their parenting skills to best support their child. 

What is the difference between ADD and ADHD: The biggest difference between ADD and ADHD is that children with ADHD have the added symptom of being hyperactive or have excessive restlessness or energy.

I hope you all learned something new! 



Monday, September 19, 2016

Christina's Story

Hello friends! I am so pleased and honoured to be sharing another guest blog, from my dear friend Christina. Christina was the VERY first person I ever reached out to in regards to my NF, and she helped shape the way that I viewed my condition. So please take a moment and read her blog post :) 

My whole life growing up I never once questioned what those “weird bumps” all over my grandmother, dad, several aunts and one uncle were; I had accepted them for who they were and not for what they looked like.  I was told at a young age that the brown spots all over my body, including the large one on my right bicep, were called café-au-lait spots and that they were something like birthmarks but weren’t birthmarks.  End of discussion. I kind of figured that since my grandmother and my dad had these “weird bumps” that I could also.  In my mind I made the decision that should I get these “weird bumps” that I would cover them, especially if they were on my arms and legs.  I planned on wearing long sleeves no matter that the temperature outside was and that I would never wear shorts again.  I was ashamed of them.  I was made fun of because of what my dad looked like.  I had been asked if a toad had peed on him.  I was avoided at times because peers thought he was contagious and that if I touched them they would get these “weird bumps” too.

Let’s jump to my junior year in high school; I was reading in my biology book and came across the term “café-au-lait spots” and FINALLY the name Neurofibromatosis.  I was excited!  I had self-diagnosed myself, but even then I did not really know, or understand, the full extent of the nature of this disorder.  All I had was a name, nothing else; no knowledge of what exactly could happen with having Neurofibromatosis (NF). 

A few years later I had decided to enlist in the United States Air Force.  When meeting with my recruiter I had openly told him I had Neurofibromatosis and he did not say anything about it being a disqualification from entering the military. I was at MEPS (Military Entrance Processing Station) at St. Louis when my dream of serving my country was shattered.  After having my physical done I waited in a lobby to be called to tell me where to go next.  It seemed like eternity while I waited for my name to be called and jumped excitedly when it was. The person behind the desk pushed a paper toward me and told me to sign it and that I was disqualified from the military.  My excitement quickly changed into utter disappointment with tears forming in my eyes as I asked “Why?”  I was told I would have to talk to the Surgeon General to find out why.  Questioning the Surgeon General about my disqualification he bluntly told me “You have Neurofibromatosis.”  I told him my recruiter knew about it all along, and still I was told I could not join ANY branch of the US military with NF.  I tried reasoning that my brother was in the Air Force.  I was told that I could ask for a waiver and it might work.  I had to get a letter from my brother saying that he had NF and that he didn’t have any issues from it. (I did not know that he didn’t have NF or that each child had a 50% chance of inheriting NF from their parent if the parent had it.  I assumed that since I had it so did he.) I was never able to get in contact with him since I didn’t have a phone or a current address for him.  I then decided that I was going to prove to the Surgeon General that I didn’t have any issues from Neurofibromatosis so I went to the library to research it.  In an encyclopedia I read that NF caused “deafness, blindness and mental retardation and in some severe cases death.”   I thought I had had my waiver because I didn’t have any of those issues, and I certainly wasn’t dead.  Sill I didn’t get my waiver and I gave up on my dream of serving my country.

Throughout the years since my military disqualification I decided to live life the best I could, my having Neurofibromatosis was mentally put on the back burner and not much more thought was given to it.  I don’t exactly recall when the dumbbell plexiform appeared on my right wrist and I actually attributed to its appearance to a couple of wrist injuries that I had had when I was around 16.  I didn’t even know that it was a tumor or that its growth was related to Neurofibromatosis.  I wasn’t too worried when café-au-spots appeared on my oldest and youngest two children and I was told that they have NF since I wasn’t effected by my NF.  Little by little and bit by bit over the next few years I gained more information on issues related to NF, not because I was researching it, but because one of my children would develop a medical issue and I would be told it was because of their NF.  I was shocked when I was told that my oldest son’s scoliosis was due to his NF because I had never been told the two could be related before and again I was shocked when I was told that my youngest son’s seizures were also related to his NF. Still I kind of just lived life as it was and not much more thought was given to our Neurofibromatosis.  Again, I had just accepted these things as they were.

 In October of 2008 I decided to get with the times and get a Facebook page and get in contact with my niece so that we could get all the cousins together for a picture with their grandmother. After finding her and looking up people I went to school with, I wanted to see if I could find other people with NF.  I had done a research paper for my biology class in college and was taken aback with what I had found out about NF so I wanted to find others with it too.  I had found so many people with NF that I had to start a second Facebook page for people with NF, and now I have over 800 friends on that page. I even reached out to some people on the “Can Mia get 1,000,000 fans to raise awareness of Neurofibromatosis” and sending them a friend request (this is how I met Courtney).  In 2012 I wanted to be able to meet others with NF so I decided to ask who would like to meet at the St. Louis Zoo for a get together.  With the help of Michael Forbes and Rebecca Damschroder we were able to get around 40 people to attend the event.

 I was hooked on finding out all about NF and I started diving into finding out all about it.  I have become an advocate for NF in the Central Missouri area and with some persistence was able to get Neurofibromatosis Midwest to include the Central Missouri area in their covered area and am the chairperson for the chapter in my area.  I have given talks to my local high school’s genetics and advanced honors biology classes on Neurofibromatosis.  I helped to start a support that meets monthly and now we are in the process of planning a Great Steps for NF walk hopefully the first Saturday in October.  Looking to the future I am in the early stages of doing a fund raiser with silicone bracelets with the slogan “Show-Me your NF and I’ll show you mine” (Missouri is the Show-Me state).  I can truly say that the slogan “I have NF, but NF doesn’t have me” is true in life.  I don’t let my having NF control me or my family.  On a positive note, my youngest son is being granted a wish through Make-A-Wish because of his NF and we will be headed to Washington D.C. soon, but that’s another story for a later time.

- Christina 

Sunday, September 4, 2016

Need for Change

I bet you, that maybe 10 of the 36 physicians that I have seen in my lifetime have heard about Neurofibromatosis. Now that is just hearing about it, I bet only about half of those doctors were actually well educated on NF. For a condition that has a prevalence rate of 1 in 3000 people (for NF-1), I really don't think those numbers are cool... who agrees with me?!

Probably one of my most distinct memories, was when I had to see a specialist regarding the masses that were found in my pelvis. Physicians were unsure if they were tumours, or if they were cysts. I got sent to a specialist in Red Deer, and I had high hopes for the appointment! I remember sitting down in his office with my Mom, and when he asked me if I had any "significant medical history" I told him that I had Neurofibromatosis. He looked at me like I had a second head. 

"What's that?" he asked me. "I've never heard of it before."

I felt myself clench up. I felt the heat rushing to my face. How was this fair to me? How come I had to miss school again to see a doctor who didn't even know what I had?! I was furious. All I kept thinking was "Could you not have maybe looked at my chart before I came in so you maybe had an idea of what you were dealing with?" 

With great reluctance, I began to tell him all about Neurofibromatosis and it's manifestations in the body. I was 16 at the time. I was educating the doctor. I was supposed to be the patient. 

Believe me, this wasn't the last time that this happened. I had several after this doctor inquire about my condition and each time I was met with a doctors puzzled face, I felt just a little more defeated. It wasn't fair that I wasn't getting adequate medical care, and it wasn't fair that I had to constantly suggest what my plan of care should be. 

So I could keep ranting here, or I could suggest some things that the medical community could do to improve on this rather big issue! So here we go:

1. Improve Education on Neurofibromatosis 

So I think it is safe to say, since I went through nursing school, that there is an utter lack of NF education for medical professionals. Take a look below at this picture. This is a passage taken from one of my textbooks (the only textbook might I add that says ANYTHING about NF). 

Three sentences.... THREE SENTENCES? That's it? It's no wonder there is a lack of understanding on what NF can do when there are THREE sentences on it in a medical textbook! And look at how much information is missing! Where does it talk about the types of NF? Or how about the issues people face with learning disabilities? How about the fact that there is no cure? Or that tumour growth can be exacerbated by changes in hormones?  

Looking at this, I don't blame people for not knowing about what NF is! How should you know what it is when that's all they teach you?! I was actually chatting with a 4th year medical student the other day at work and asked her if she had any education on it in school. She told me that she maybe had a lecture or two on it, but definitely not more than 2 hours of education. I was able to teach her a few things about NF and its trademark signs/symptoms. so now at least there is one more educated doctor out there! Horray for awareness! 

2. Improve Funding for NF Research 

Here's a fun little statistic for you. In 2016, Neurofibromatosis received 0.25% of the funding for research that breast cancer did! Last year, breast cancer received well over 6 billion dollars for research purposes, while NF received a little over 15 million. If you calculate that out, breast cancer got 40000% MORE funding than NF did.... 40000%!!!!!

I mean 15 million is great! When I initially started doing my research on how much money NF would receive for research, I was only expecting to see a few million dollars! But when you compare the numbers side by side, it seems like nothing in comparison! 

I'm not saying that breast cancer shouldn't have all that money invested in research, because it certainly should! But medical breakthroughs will not occur without research, and research cannot be done without money...

Now there are a lot of things that could be done to better the care of people who have Neurofibromatosis, but we can't do it all at once. Baby steps my friends! Comment below on how YOU think the medical system could be changed for the better!

-- Court