Monday, December 21, 2015

That One Doctor...

I'm sure every one of you regardless of your medical diagnosis have experienced a not so great doctor. It's unfortunate, but they are out there. Over the last 9 years I've seen 36 different physicians of varying specialties, in different cities and for very different reasons. There is one doctor who stands out in my mind for being less than a stellar guy.

When I was in my Grade 11 year, my Mom and I decided to make the trek down to the Mayo Clinic in Rochester Minnesota to be seen by some of the leading specialists in their regarded fields. I had been struggling with chronic headaches for 6 years at that point in time, and with no promises of finding and answer here, my Mom and I packed our suitcases to being this life changing journey.

Before I left for the Mayo Clinic, I was asked to keep a headache dairy (which I had done many times before) so the specialists there could determine if there were any cyclical patterns to my headaches. I kept track of everything: the number of hours I slept, what I ate, what exercise I did that day, the weather, my mood, how much water I drank, the characteristics of my headaches, any stressors I experienced that day, rating my headaches on the pain scale... I think you get the picture. I did this for almost 5 months before taking off on this new adventure, and I was confident that the neurologist I was going to see down there would have some answers for me.

I remember sitting in that exam room with my Mom, waiting for this neurologist that I hadn't met, but already admired. I held my headache diary in my hands, ready to answer any of the questions he had for me. I had already seen 4 neurosurgeons and 3 neurologists at this point in my life so I had a pretty good idea of what my appointment was going to look like.

We waited for well over an hour for this guy, which I regarded as something that was relatively normal since it had happened to me so many times in the past. When he whisked into the room he didn't bother to introduce himself, nor did he bother to make any small talk with me. His opening line was:

"So, what's wrong with you today?"

A little dumbfounded, I struggled to find my words. He sounded like he would rather be anywhere but in that exam room with me. I quickly explained my history to him, and told him that I was here because of my chronic headaches that nobody has been able to figure out. I remember handing him my headache diary, telling him I kept track of them for the last 5 months. He immediately laughed, and not like a snicker, but a full out laugh. He tossed the headache diary back at me, looked at me and said:

"You're such a Type A personality, I can tell you right now that's what caused your headaches. You've done this to yourself!"

Honestly, I couldn't even formulate words at this point. I was horrified. Humiliated. Angry. How dare he make those assumptions about me?! How dare he make jokes at my expense? It took me several moments to gather myself before being able to speak. I don't even remember what I said to him, but I do know I was trying to hold back my tears.

Throughout my appointment this neurologist took several phone calls, walked in and out of my room and rarely ever made eye contact with me. To be fair, I don't know what was going on in his life at this point in time. Maybe he was dealing with a terminal patient, maybe he had some family issues, maybe he was just having a bad day...we all have them, we are human! But how he was dealing with whatever was going on in his life made me feel extremely devalued. I felt like a file number, and not a patient. He was accusing me of causing my own pain?! Really? He made me feel like I wasn't being heard, he made me feel like I was just wasting his time... no person or patient should ever feel like that.

What 17 year old would electively choose to be poked, prodded, scanned and examined for almost 2 weeks while they could be at home with friends a family? What 17 year old chooses to miss weeks of school because of chronic pain, doctors appointments and tests? I know I wouldn't. He labeled me, before even knowing my story. He made assumptions, which drastically affected the quality of care he provided me. This. Was, Not. Okay.

I left his office that day feeling completely defeated. He honestly did nothing for me. Didn't give me any answers. He didn't even go over my MRI with me. He just told me "You're fine, apparently you need to engage in some stress relieving techniques." To be fair he did send me for an x-ray of my neck because he suspected the curve in it was "backwards".

My Mom was absolutely furious with the treatment I received, and took this issue to the physician who was overseeing my care. Within 12 hours I was booked in with a different pediatric neurologist, who was a complete 180 from the first guy. He listened, he empathized, he did every neurological test in the book, he took over 45 minutes to sit down with me and explain my MRI in detail. He was incredible.

I guess the point I'm trying to make here is, you're ultimately going to come across a health care professional (whether it is a doctor, nurse, paramedic, pharmacist, etc) who is going to treat you poorly. Unfortunately, it's inevitable. Not all medical programs teach compassion, and not every medical practitioner makes compassion one of their top priorities. But, what I'm saying is you have the power and the potential to change that! Take your health into your own hands and advocate for yourself! You know you the best, and if you know something is wrong find someone who will listen. Find someone who will empathize and understand. Find someone who isn't afraid to seek a second opinion, or run some tests. Find someone that you trust, because it is your health! You have all the power, you might just have to search a little bit to find your voice.




Have a good week everyone, and Merry Christmas!

Court




Monday, December 7, 2015

Lyndon's Story

Hey everyone! Please take the time to check out my guest writer this week... Lyndon Demers! I met Lyndon through MBNF and he has graciously agreed to share his story with the group... so here it is!

HAPPY 28TH BIRTHDAY TO ME!  Hello, my name is Lyndon Demers and I am delighted to share my story on Courtney’s Blog, especially on my birthday.Thank-you to Courtney, the MBNF Support Group and all the readers for making this blog very successful.

After Courtney presented her story in October at the first MBNF Symposium, she mentioned or suggested to me I should share my story.  I agreed a few weeks later, and I asked to be a guest writer for December 7th, my birthday. So I had a few weeks to plan and write this story, but I couldn’t think about what words on paper like what I am doing now on December 4th.

I have lived in 5 provinces, and 8 cities throughout my life and been to many schools, left numerous friendships behind. The hardest move for myself personally was the move from Edmonton, AB to Portage La Prairie, MB in 2002.  Sometimes, I still call Edmonton my actual home but after being in Winnipeg, MB since 2003, Winnipeg feels more like home every day.

I was diagnosed with Neurofibromatosis Type 1 at the age of 3-years old. I have faced numerous learning challenges through Elementary, Junior High & High School, and yes, even college.  Back in Grade 1, my reading was average and I was held back a year. My writing/printing on paper was poor (probably still is) through school, I was lucky enough at each school in each city I have lived in, the school either have me use an in-class computer, which had a keyboard that connected to a computer and typed out my notes in a word document. Oh my, how technology has changed from the mid-90’s to 2002!!!  Teachers also supplied printed notes so I wouldn’t be distracted in class.

My first major surgery was at the beginning of Grade 6 (1999), the decision was to have the surgery on my Achilles Tendon, putting me in a cast rather in being in cast the following fall in Grade Seven (2000). Well, that plan failed, I ended up being in a cast the following year because I jumped of a ledge on the steps at my home and broke a bonne in the other foot because there was a wasp that was around me.  I was attacked by dozen of them a couple years prior to 1999, ever since then I have been terrified of wasps.

I have a tumor near my left eye, I have 2 surgeries to do a biopsy on it, in 2002 and in 2009.  Unfortunately, I think it is growing back again. From the time I was diagnosed until 2007, I never met one single person or family with Neurofibromatosis.  I started working at Walmart in 2004, and it probably was not till 2005 or 2006 when I started to deal with members of the public face to face.  The difficult part of it and to this day is sometimes still tough to deal with. Customers have always noticed my tumor, but yet they don’t know it is actually a tumor.  They think it is a black eye, the way some customers ask is tough to answer.  The toughest question to deal with,   “What does the other guy look like?” .The reason why it is tough to for me answer is, I don’t get into fights or go looking for fights.  The only fight I have been through and am winning, is the battle with Neurofibromatosis and also NHL video game fights.

So starting in 2007 was the start of a life-changing adventure.  I was able to go to my first meeting for MBNF, back when MBNF was a small group, but I met numerous families with NF including the DeGagne family & the Gregorash family. Their names are important for me to name at this time since they have had such a big impact on my life. Since 2007, I have watched the group grow and been part of an extended MBNF Support Group family, I have seen MBNF gone from a non-charity status to receive non-profit charity status.  I have shoveled for NF, done multiple NF Charity BBQ’s at Walmart which they have matched each time. I went to 2 NF Symposiums and been to numerous Run for NF events.  I have dated and lived with someone with NF.  Joining MBNF Support and becoming a director and having provincial monthly law for Neurofibromatosis, are just some of things that have changed my life in the last almost 9 years.  At the first MBNF Symposium, I was honoured with a volunteer appreciation award, which I was very honoured to accept.  
I love being part of the Manitoba Neurofibromatosis Support Group, we have a great bunch families and friends and I am looking forward to next 8 years.   I would like to thank my family and friends for supporting me.   Thank-you to Courtney for coming to Winnipeg and sharing your story.
This story is 28 years in the making! Cheers to next 28 years!

Thank you for reading my story!  Oh yeah! This just another surprise as no one knew except Courtney, I was putting up my story on Courtney’s Blog!

I hope you all enjoyed Lyndon's story, please comment, like or share this post to show your support!


If you're interested in sharing your own story on Courtney's Column like Lyndon did, comment below and I will get in touch with you!


Monday, November 30, 2015

Acoustic Neuromas

In the brain, there are 12 essential pairs of cranial nerves that carry out many different functions such as bringing information from the sensory organs to the brain, control muscles, help control glands, and help control organs such as the heart and lungs. Here is a diagram of the cranial nerves in the brain, in case you all were wanting to memorize them on your day off! To all my nursing friends, does this bring back memories from second year?!


An acoustic neruroma (also called a vestibular schwannoma) is a slow growing tumor that develops on the vestibulocochlear nerve, which is in charge of hearing and balance. This type of tumor is usually slow growing, and is seen more often in people with Neurofibromatosis Type 2 than in those with Type 1.

Causes: 

It is thought that acoustic neuromas develop from an overproduction of Schwann cells. Schwann cells help speed up how fast messages are sent along special nerve pathways in the brain. It is estimated that 5% of brain tumors caused by NF are acoustic neuromas.

Signs and Symptoms include:

  • Hearing loss -- this is the most common symptom of acoustic neuromas, and is seen in approximately 90% of patients
  • Tinnitus (ringing in the ears) 
  • Vertigo 
  • Problems with balance
  • Feelings of pressure inside the ear
  • Facial weakness and numbness 

Diagnosis:

The two most common tests used to diagnose acoustic neuromas are ear examinations and hearing tests. Usually the first test performed to diagnose an acoustic neruroma is an audiometry test, which is hearing test that measures how well a person can hear certain sounds. A patient listens to different sounds and speech and is attached to a machine that records the patients responses and measures hearing function. Another test that can be done is called a "brainstem auditory evoked response test", which provides information on a patients brainwave activity as they listen to different tones. While the patient listens to these different sounds, they have electrodes attached to their scalps, which help to pick up the brains responses to different sounds and tones.

MRI and CT scans can be used to determine the exact location of the tumor on the cranial nerve and the size of the tumor

Treatment(s): 

The two primary treatments for acoustic neruromas are surgery and radiation therapy. These surgeries have some pretty funky names so I'll do my best to describe them for you!

1. Translabyrinthine -- an incision is made behind the ear, and the bone behind the ear and some of the middle ear is removed to access the tumor. This type of approach allows the doctor to see the facial nerve, but it unfortunately results in permanent hearing loss.

2. Retrosigmoid/sub-occipital --- the skull is opened near the back of the head. Typically this is used to remove larger tumors, and there is a greater likelihood that hearing would be preserved... Horray!

3. Middle fossa -- a small piece of bone is removed above the ear canal to access smaller tumors, hearing may also be preserved with this approach too!

Radiation therapy is usually used when surgery for whatever reason is not an option.



I hope you all learned something new this week, I know I sure did!

Court



References used:
https://faculty.washington.edu/chudler/cranial.html
http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/brain_tumor/center/acoustic-neuroma/diagnosis.html 
http://www.webmd.com/brain/acoustic-neuroma-causes-symptoms-treatments?page=2#1

Monday, November 16, 2015

Why I Want to Be a Nurse

One question I commonly get from co-workers in my undergraduate position, my peers, and patients is "Why did you become a nurse?" Well, my answer isn't quite as simple as some people's might be. Sure, I have an innate desire to help people, but my passion for my career stems from something much deeper.

Having been hospitalized for tests, procedures and appointments, means I've had plenty of exposure to the health care system. I've had some amazing care over the years, but I've also had some that was extremely sub-par. I learned a lot about caring, compassion and empathy long before I immersed myself in nursing school and learned about these qualities.

There's one nurse that sticks out in my mind from the last 8 years of medical care I've received, and I attribute much of my passion for nursing to her, and her zest for life.

I remember sitting in one of my neurosurgeons offices after one of my many exhausting visits trying to figure out the root cause of my headaches, feeling completely defeated. Another appointment, and still no answers as to what was causing them. My doctors were stuck, they didn't know what else to try as at this point, I had done almost everything to try and get rid of these headaches. I was really struggling with chronic pain, anorexia, and depression at this point in time, and all I wanted were some answers.

I was starting to pick some of my things up and put my jacket back on when the nurse practitioner who worked with my neurosurgeon walked into the office and sat down next to me. I thought she was there to tell me something miraculous... they found the root cause of my headaches! They know what to do with me to get rid of this horrible pain! HORRAY! My mind was racing thinking of all the wonderful things she was going to tell me. Instead, Wendy grabbed my hand and looked me directly in the eyes as she said "Courtney, you have anorexia."

Those words hit me like a load of bricks. I felt breathless. It took me a minute to process what she was saying. I knew I had an eating disorder, so that wasn't a surprise to me when she "broke the news". What surprised me was, Wendy said the words that nobody had the courage to say before. She made my problems real. She recognized my silent cry for help. She realized that I needed validation, that I needed someone to bring me back to reality. All I remember at this point in time is my eyes filling up with tears, I started to cry. I felt relieved. Wendy sat there in complete silence as she stroked my back. She let me sit there until I could gather myself enough to say:

"Thank you"

Wendy didn't do anything life saving, she didn't perform CPR, or give me a medication that would save my life. She didn't find anything abnormal in my neurological assessment. but she recognized the emotional pain I was experiencing, and that takes a special person. Wendy didn't medicalize  me like so many people had in the past. I've seen my chart, with words like "anorexic", and "depressed" scrawled across the page. I didn't choose  to have depression, I didn't choose to have anorexia. These illness are not me, they were part of me, but they did not define who I was. I was (and still am not) a diagnosis. I am a person with a diagnosis, and that's how Wendy saw me. She saw me as a young teenager who was terrified, and recognized that all I needed was someone to talk to. To her, I was a holistic being, I was so much more than a file number or a condition. I was a person. Who had feelings, who felt pain, and who just needed a little bit of validation.

It was after this encounter that I really realized that I wanted to be a nurse. I wanted to be someone that my patients could trust, I wanted to be someone that made a difference in the outcomes of an ill individual. I wanted to be a voice for those who couldn't speak up for themselves. Wendy saved my life, and I felt such a strong desire to reciprocate and give back to my community.

Now, I don't expect to have the same kind of experience in my future nursing career. All I expect of myself is that I put my scrubs on everyday and remember that my patients are people. I've seen it all too often... nurses are busy. They have heavy schedules, are caring for a number of very ill patients at one time. There are medications to give, dressings to be changed, patients to be re-positioned, new orders to be processed, admissions, discharges, deaths... the list of tasks that a nurse has on any given day is endless. There are days that I work that I don't even get to use the washroom in the 8 hours I'm there because I am so busy, but I will NEVER neglect my duty as a nurse to see my patients as holistic beings. I will never forget that they too, may just be looking for a little validation.


- Court

P.S. For any of my nursing friends reading this.... 199 days till graduation! Woo hoo!

Monday, November 2, 2015

Finding Courage Behind Ignorance

You know, over the years I've come to realize that people will say almost anything behind a computer screen. They're protected, anonymous. People can say what they want and not have to deal with the consequences. People find solace and comfort knowing they're protected in cyberspace, and this a troublesome problem.

Recently, I came across an article on Facebook called "Horrible Disease: 64-Year-Old Woman Covered in Benign Tumors". Intrigued and interested in the article on Neurofibromatosis, I clicked the link and was soon blasted with people's ignorance and hurtful comments. The article itself said that this woman was "once beautiful" and that statement really made me think. Why was she once beautiful? Is she no longer beautiful because of the tumors covering her face? Is she no longer beautiful because she doesn't meet what society's "standard" of beauty is? The ideal body has always been some form of "slim", with a face with prominent cheek bones and big eyes. In order for a female to go into the modeling industry they have to be 5'6-5'11 and weigh between 90-120 lbs... meaning the standards of beauty have been unrealistically set. WHY is this society's standard? Why are we so focused on physicality when there is so much more than appearance to human nature? Why are we judging this lady based on her physical assets?

After reading the article and watching the video, for some reasons I decided to scroll down and read some of the comments posted, hoping that I might be able to discover more people in the NF community that I could network with. Unfortunately, I found nothing but ignorance and cruelty. I read through the comments, keeping track of two different things:

1. Hurtful comments
2. Comments that encompassed compassion, empathy and kindness

I was shocked when the number of cruel comments completely outnumbered those of kindness and compassion. My heart physically hurt... why are people so cruel?...I kept asking myself. How does this benefit someone? I've debated about posting some of these comments below, but I'm not going to because I want this to be a place of positivity where people feel safe, I don't want any attention to be drawn to the negative aspects of social media.

After sitting in front of my computer for well over half an hour trying to think of something to say to these people who were making awful comments, I came up with nothing. Nothing that I say will change their perspective, nothing that I can say will make them less ignorant or less demeaning. I don't need to start a war on Facebook to make change, because I want the change to start here. 

For so long, I strove to be the girl who fit society's definition of beauty. I wanted to feel like I fit in. If I looked like I was supposed to, people would like me... right?! After trying for so long to "fit in" I realized that I wasn't doing something right. I needed to make a change. I came to the realization that I can try my very hardest to fit that cliche beauty standard, but there would ALWAYS be someone out there who disapproved, or thought I could be better. I asked myself why I cared what other people thought of me and I came up with nothing.... why should I care what people think? As long as I am happy with me, then shouldn't everyone else simply accept that? 

Now, the point of this post was not to highlight the cruelty of some people or to bring shame to this article. The point of this blog is to provide one thing to anyone reading: courage. Now, courage sounds all great and mighty but it requires us to let go of what other people think of us. It requires us to act boldly, to be brave, and dive into a web of self-acceptance. Courage isn't something you'll wake up one day with, or develop over a week. Courage is an ever evolving concept, where our vulnerability is made visible to everyone, and I believe that once we let go of what other people think of us, we gain more insight into our own self worth ... THAT is when we will start to make change in the NF community. We don't need to retaliate on social media, we just need to show people that regardless of what they think or say, we will still always love ourselves. In the end, that's all that matters... right? 

Have a wonderful week everyone, try and say something positive to yourself and one other person today!

- Court

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

Headaches

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!

Court

References:
http://www.health.com/health/gallery/0,,20484672_6,00.html
http://www.mayoclinic.org/diseases-conditions/tension-headache/basics/treatment/con-20014295
http://www.mayoclinic.org/diseases-conditions/migraine-headache/basics/treatment/con-20026358
http://www.mayoclinic.org/diseases-conditions/sinus-headaches/basics/definition/con-20025426


Monday, September 14, 2015

Diversity: Accept it. Embrace it. Learn more. Celebrate it.

Hello everyone! Please take some time out of your day to read this wonderfully written blog post by my friend Melissa. Melissa does not have Neurofibromatosis, but she does understand the concept of self-acceptance and reaching that stage of self-love. Make sure to leave a comment to show your support!!!

Hi friends!

                I’m Melissa Kreil & I met the beautiful Courtney Wiloughby through dance class, back when we were wee little preteens. It was a huge honor for Courtney to ask me to write a post about self-love for her blog!  Self-love has been a difficult journey for me & though it’s been hard, it’s also been really beautiful.  

First off, you have to realize that whoever/whatever you are, you’re good enough. You never have to apologize for being yourself.  Radical, I know. People are going to criticize you no matter what you do because that’s just what people do. The trick is, you don’t have to even consider what they say, don’t be sorry for being you. Sometimes people who you love can be the cruelest, but it still applies. What they say does not matter.

Once I realized this, I started to question why I ever felt bad in the first place. The answer is pretty much always an outdated social construct. Why is it “bad” to have a certain body type? Why can’t we be attracted to those of the same sex? Why are people in a minority of race or culture faced with so much prejudice? Why must women be feminine and males be masculine? The truth of it all is, none of these social constructs need to rule your life. As Elsa says, “Let it go”. You don’t have to fear the diversity in the human race. Accept it. Embrace it. Learn more. Celebrate it.  Once you let go of all judgements of others, apply them to yourself. You don’t have to be ashamed about your appearance, you’re hella cute! Do you identify as another sexuality besides straight? That’s so awesome! Have you always preferred makeup over trucks? Fantastic, embrace what you love! Are you not originally from the country you live in? That’s beautiful! Just drop all judgements of yourself & others and just celebrate how beautifully complex and unique the human race is! And you’re a member of that really cool uniqueness!

I explored the concept of identity a lot after I realized all this. For me, I’m female, white, bisexual, extroverted, feminist, youtuber, student & Disney lover. I would think and write a lot about each part of myself, what I liked and what I struggled with. Eventually, I just came to a point where I really love every part of myself I can think of, even if they’re things that not everyone understands or supports. If you drop the fact that there’s nothing wrong with being different, it’s so much easier to live free of judgement. All that matters is the fact that I celebrate who I am. It’s so fun to be unique.

Along with my journey, depression and anxiety have been a big part of my life and have been very difficult to deal with. I was ashamed of both for a really long time and I would isolate myself from people when I was really struggling. I spent many nights in really intense panic attacks completely alone and they were some of the hardest parts of my life. Eventually I began telling people that I’m close to. As I did so, I began really accepting that this is a fact about myself and started researching, exploring my options and finding others who experience similar things. Through this I really realized that I needed help, and have gone on medication despite a lot of negativity I received from people that matter to me. I have no shame about my medication because it helps me be the best version of myself. Having a support group to hold you up when you’re struggling with accepting yourself is super important. I realize that I’m very lucky and not everyone has a support group to fall back on. If you’re in this situation, you can always tweet me or message me. I’m always here to help, no matter what.

Thank you so much for reading! It’s been such a pleasure writing for you! There is so much more I could say but I didn’t want to write a novel today. If you want to contact me or hear more from me, I’ll leave some links below:


Monday, August 24, 2015

Body Image Crisis

We live in a world where media sends a blast of mixed signals. Ads consume the radio waves about weight loss techniques for the ever expanding obesity epidemic, and popular daytime television shows such as Dr. Oz emphasize different techniques to "blast fat" and "shred the pounds". Sure, with 60% of Canadian's being overweight or obese some of these ads can be certainly helpful, but what about that small population of individuals where it could be life threatening?

Fact of the day: Did you know that there are more people who are obese in the world than there are people who are starving, even though over 50% of the worlds population still lives in poverty?

As a budding nurse, I agree that some of the weight loss ads are vital to people's health. Childhood obesity increases an individuals risk of developing lifelong conditions such as diabetes, heart disease, asthma and sleep disorders. Majority of these complications can be prevented with proper education, but my question is how do we specifically target this population?

Remember when I referred to that "small" population where these dieting ads and hype around weight loss can actually be detrimental? Do you know what population I'm referring to? I once belonged to this population.... it's individuals dealing with eating disorders.

Did you know, that girls as young as EIGHT years old think about dieting or actually diet?!?! And that 90% of girls are unhappy with the way their bodies look? According to a study done in 2002 in Canada, 28% of girls in grade 9 and 29% of girls in grade 10 have already engaged in weight loss behaviours such as dieting, restricting, excessive exercising, use of laxatives, vomiting and smoking to control their appetite. WHAT KIND OF MESSAGE ARE WE SENDING TO OUR CHILDREN? Children who engage in weight loss regimens are 18 times more likely to develop an eating disorder than their "healthy" or over-weight counterparts in a six month time span...

Just like obesity, eating disorders such as anorexia and bulimia have serious and life threatening complications. Some of these complications include fertility problems, electrolyte and hormonal imbalances, bone density loss, anemia and internal bleeding. Lucky for me, I never suffered from any of these complications when I had my 3 year stint with anorexia, but I did suffer from more of the psychosocial complications (depression, anxiety, social withdrawal).

So where am I going with all of this? I'm not even sure. I think what I'm trying to get at is we, as society, have a dilemma. With such a large population suffering from being overweight and/or obese, it's extremely necessary to take action and combat this entirely preventable epidemic. With simple education at an early age, the percentage of children who are obese could dramatically decline. However, teenagers (especially girls) are extremely impressionable by social media, and it is estimated that 27% of teenage girls feel pressured to diet or have a "perfect" body from what they seen online or on TV. Advertising images have also recently been accused of giving both men and women unrealistic ideas of what their bodies should look like. So what do we do? Do we continue to advertise, promote and educate on weight loss regimens and techniques to reach the larger part of society? But if we continue to do that, how do we protect the vulnerability of not only those suffering from eating disorders, but our younger population who are more suggestible and more prone to trying dieting techniques? Whose needs come first, and how do we even begin to make that decision?



Thanks for reading everyone, Courtney's Column is now over 7,000 views!

- Court


References: 
http://www.mayoclinic.org/diseases-conditions/childhood-obesity/basics/complications/con-20027428 
http://www.phac-aspc.gc.ca/hp-ps/dca-dea/publications/hbsc-mental-mentale/weight-poids-eng.php 
http://www.anad.org/get-information/about-eating-disorders/eating-disorders-statistics/ 
http://www.statcan.gc.ca/tables-tableaux/sum-som/l01/cst01/health82b-eng.htm 
http://umm.edu/health/medical/reports/articles/eating-disorders
http://www.healthyplace.com/eating-disorders/articles/eating-disorders-body-image-and-advertising/

Monday, August 3, 2015

Schwannomatosis

Now this blog has primarily focused on Neurofibromatosis Type 1, and there has been a post earlier on about NF-2, so now lets focus on another condition that belongs to the NF family... Schwannomatosis! Schwannomatosis is a rare form of NF, and it has a prevalence rate of approximately 1 in 40, 000 people (just for comparison NF-1 is 1 in 3,000). In this condition, a special kind of cells called Schwann cells overgrow and develop tumors. Schwann cells speed up the rate at which messages are sent in the brain, and are found throughout the peripheral nervous system.

Signs and Symptoms 


  • Chronic pain, which can occur in any part of the body 
  • Ultimately signs and symptoms depend on where in the nervous system tumors decide to grow. For example. schwannomas in the arms and legs typically cause an "electric shock" like pain, while tumors in the spine and on spinal nerve roots can cause symptoms like weakness or loss of sensation in the extremities 


Diagnosis 

Genetic testing is completed to look for mutations in the INI 1 gene, which play a role in tumor growth supression.

Diagnostic Criteria 


  • Individual is OVER the age of 30
  • AND has two or more non-intradermal schwannomas (not in the skin)
  • AND has no evidence of tumors on the auditory nerve
  • AND has no known history of NF-2 
OR
  • Patient has at least one schwannoma and has a first degree relative with Schwannomatosis
Treatment 

Ideally, the best treatment for Schwannomatosis is pain management. These patients are typically referred to pain specialists in large medical centers, where they can put together comprehensive care plans to help patients deal with their pain. If pain management is unsuccessful, then surgery can be done to remove tumors. Sometimes removal of these tumors can lessen the patients pain, but just like with NF these tumors will often grow back, so surgery can sometimes only be a temporary fix.

I hope you all learned lots learning about this "sister" condition to Neurofibromatosis. If you would like to learn more check out some of the links below!

Court





References: 
http://www.ctf.org/Learn-About-NF/Schwannomatosis.html
http://www.nfauk.org/what-is-neurofibromatosis/schwannomatosis/ 
http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/neurofibromatosis/schwannomatosis/ 
http://www.nfnetwork.org/understanding-nf/what-is-nf/schwannomatosis


Monday, July 20, 2015

Danielle's Story

Thank you to guest blogger Danielle Lalonde Smith for sharing her sons (and therefore her own) story of living with Neurofibromatosis. Danielle's son, Tyler, was diagnosed with NF at the age of 8. Please take the time to read Danielle's story and show your support :)


From our NF journey 7 years ago….

At some point during each and every day I want to cry; sometimes I do, sometimes I don’t.  At some point every day I ask why?  At some point every day my heart shatters into a million pieces.  At some point every day I am angry; sometimes at myself, sometimes at everyone else.  At some point every day I ask why me?  At some point every day I hate myself. At some point every day I look at my son and wish we could connect on some other level.  At some point every day I realize that I love this kid more than anything in the world, and I thank god that he is the way he is.

Today I am just freaking angry:  it is his birthday, and guess what?  2 invited friends don’t show up or call at all, one other says he would rather go to the fair with his “girlfriend”.  He has one invited guest and another friends’ younger son, and guess what, he is acting ridiculously immature and my thoughts are; is this the reason no one has shown up, or is he acting like this as a defense mechanism?  I will never know because he will not speak to me about these things. I can try to talk, but know that it will just make things worse.  It is these frustrations that continue to make me so so so angry.  I have cried, cajoled, demanded, sweetly asked for help from the school  which is supposed to be the only avenue available here in town, and have been shut down now for two years with excuses from everyone.  What it boils down to is that no one seems to want to do their job or take responsibility.  The other part is the judgement from staff about this “hidden disability”.  He looks normal; make him act normal!  What is wrong with your parenting?  I realize that sometimes Tyler’s disease becomes all about me....how it is affecting me, how others are judging me, how difficult it is for me to cope.  I take it as a personal affront when he cannot get the help he needs.  How far do you push it?  How hard?  Will it make things worse for my child at school when all the staff despise me?  

Does it even matter?

I look into those eyes and all I see is this incredible keen intelligence.  He is so aware of his surroundings, but yet not in tune at all.  How do I teach him that?  Can I teach him that?  I have no answers still.  My son is this beautiful spirit that just needs to find his place and all will be well.  Do I make too big of a deal about some things that really are very small in the grand scheme of things?


To be continued when I have the time to put my thoughts into words...when I can stop crying...when I have the time to take a break from being a parent, wife, child & nurse and put thoughts down productively rather than allowing all my negativity to shine through, to be continued when I have any notion that things have changed or improved or anyone has made a difference, even if I have made a difference...to be continued as we learn new things...to be continued as our world shrinks or expands...to be continued....


Monday, July 6, 2015

MRI Day!

Did you know? -- Currently, the Canadian government is attempting to reduce wait time for individuals requiring health care interventions, most specifically MRI scans. There have been efforts to reduce wait times for these scans, as Canada lags behind in it's number of diagnostic imaging devices per capita. Respectively, Japan and the United States have 35.3 and 19.5 MRI units per million individuals, while Canada only has 4.6... SAY WHAT? So now that you have a cool, new interesting fact for the day, let's proceed with the actual content of this blog post!

So, MRI day. A day filled with ambivalence and  raging emotions. MRI day brings about feelings such as fear, frustration, relief, indifference. They cause you to feel grateful to have access to such advanced medical technology, but at the same time you wish you didn't need to access it in the first place. 

A few years ago when I was still under the care of my pediatric neurosurgeon, he gave me the green light to go ahead and have an MRI every 2 years instead of making it a yearly occurrence because he thought I was "stable". Fair enough. However I laugh because this has yet to happen. It seem like every year some kind complication arises that requires the assistance of an MRI machine. This year? Vertigo and progressive hearing loss. Last year? Irregular heart rhythms and wonky blood pressure. The year before? Progressively worsening deformity in my chest wall. I think you all get the picture... nothing really stays "stable" for too long when you have Neurofibromatosis. 

Even though MRI day happens every year, that doesn't take away the emotions that accompany it. There are 2 central thoughts that typically go through my head on these days:

1. Please, let there be no tumor growth 
2. Please. let them find something on the scan

Now, I know what you all might be thinking... how can I be simultaneously wishing that nothing shows up on my scan, but also hoping that they find something? The answer is quite simple:

 Nobody wants to hear that their body is rebelling and growing random tumors in random locations. Nobody wants to have to deal with the ambiguity of whether or not there is going to be tumor growth. Overall, it just sucks to find out they've found a little (or in some cases quite large) white spot on your scan. Being diagnosed with a tumor can honestly be life altering. 

Now, to the statement that is probably confusing a lot of people: "Please, let them find something on the scan" -- For me, MRI's come about when I'm experiencing symptoms that interrupt my daily life. This year I started experiencing vertigo (which is different than being dizzy or lightheaded) and coupled with the progressive hearing loss I've had over the last few years my doctors thought it would be best to scan me. For those of you who have experienced vertigo, you know that it is NOT a pleasant experience. Vertigo is the false sensation that you, or the things around you are moving. There were times that the vertigo spells were so bad I almost fell over because I couldn't maintain an internal sense of balance... it was terrifying. When symptoms like this come up I almost have a glimmer of hope that something abnormal will show up on my scan. If they find something, then they can start to develop a treatment plan. The treatment plan will help control symptoms, and when symptoms are controlled I can live a happier, symptom-free life. Conversely, when there is nothing of clinical significance showing up on the scan, developing a treatment plan can be like a shot in the dark. You may need to trial medications with nasty side effects, go through more diagnostic tests, see other specialists... all of this takes time and effort, all while you're still suffering from whatever symptoms required you to have a scan in the first place.

I remember when I fist started having chronic headaches and my neurosurgeon put me on a medication that was "effective in 75% of patients"... SWEET! They started me on a low dose (because my weight was so low at the time) and boy can I tell you it was probably the worst six weeks of my life. The side effects I was experiencing from the medication were horrible. It felt like I had permanent brain fog... I could honestly be holding my shoe in my hand and I would ask my Mom "Where is my shoe?" or at dinner I would want someone to pass the salt and I would point at it but I couldn't think of what it was called for the life of me. I even fell asleep in class a few times. My docs were surprised because the dose was so low, but I refused to be on it any longer because it was interfering so much with my day to day life! Now that I'm in nursing, I've figured out that health care professionals have dubbed it the "California drug" because it can sometimes mimic the feeling of being high or stoned.... great! This would have been one of those times I would have been grateful for something to show up on the scan!

I should be getting my MRI results in the next few days (or maybe weeks) so I will make sure to update you all when I have those results in my hands! Have a wonderful week everyone!

Courtney







References: 
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2653696/ 

Monday, June 15, 2015

The Elephant Man Disease

For quite some time, Neurofibromatosis has been mistakenly called "The Elephant Man Disease", however the man who was first called the Elephant Man  back in the 1880's actually had a condition called Proteus Syndrome... so lets learn a little bit about it!

So what is Proteus Syndrome? What causes it?

Proteus Syndrome is a rare condition that affects only a few hundred people worldwide. It is a condition that causes asymmetric overgrowth of the bones, skin and other bodily tissues, meaning some parts of the body grow faster than others. Proteus syndrome results from a mutation in a gene called the AKT1 gene. This mutation in the gene is NOT genetic, and research has shown that the mutation spontaneously arises in the early stages of fetal development. The AKT1 gene plays a vital role in regulating cell growth, cell division, and cell death. Thus, when there is a mutation in the gene, cells are able to grow uncontrollably.


When and how is it diagnosed? 

Asymmetric overgrowth usually becomes apparent between the ages of 6 months and 1.5 years, and tends to become more severe with age. Proteus syndrome is typically diagnosed based off of physical features and characteristics, however there are 3 specific diagnostic criteria that medical professionals use to diagnose this condition:

1. The overgrowth follows a mosaic (random/asymmetric) pattern
2. Complications follow a progressive curve
3. The disorder appears to be "sporadic" and appears to have no familial history


Signs and Symptoms/Complications 


  • Most commonly asymmetric bones are seen in the limbs, skull, and spine (ex: scoliosis) 
  • Blood vessels and fat (adipose tissue) can grow abnormally 
  • Abnormal skin growths can occur (thick, raised, deeply grooved lesions called cerebriform connective tissue nevus) as well as birth mark like patches called cafe-au-lait spots  
  • Distinct facial features:
  1. Long face
  2. Outside corners of the eyes droop downward,
  3. Low nasal bridge
  • Neurological deficits occur in some individuals with Proteus syndrome (these deficits include intellectual disabilities. vision loss and seizures)
  • Increased risk for developing various different types of benign tumors 
  • Increased risk for developing a blood clot called a deep vein thrombosis (DVT) 

Treatments 

Every case of Proteus syndrome, meaning there are thousands of different "treatments" out there that aim at reducing symptoms on an individual basis. There is no cure for Proteus syndrome at the moment, but some treatments that have proven to be effective for most patients include surgery to remove overgrown tissue, amputation of overgrown limbs, dental surgery and/or laser treatments to remove abnormal skin growths

Who is Joseph Merrick?

Joseph Merrick was born August 5, 1862 in Leicester, England. He began to develop several physical deformities at the age of 5 such as lumpy, grayish skin, bony abnormalities and various different tumors over different parts of his body. At the age of 17. Merrick was forced to join the workforce, and much to his dismay he found the work that he had to do almost intolerable.

In 1884, Merrick contacted a friend about becoming part of a "human oddity show", and was soon exhibited as the "Elephant Man, Half-Man, Half-Elephant" which was a huge success according to the literature.

Over the years Merrick's health began to decline, and no physicians were willing to treat him as he was deemed an "incurable". He was admitted to the London Hospital in 1890, and ultimately died due to a severed spinal cord (his head was so large and heavy due to several deformities that when his head fell backwards due to poor positioning, it severed his spinal cord). He was only 27 years old when he passed away.

It was initially thought that Merrick had Neurofibromatosis, but years later researchers deemed that he indeed did have Proteus Syndrome.






I hope you all enjoyed reading about Proteus Syndrome and how it differs from NF, now go spread some NF awareness!

Court


References:
http://ghr.nlm.nih.gov/condition/proteus-syndrome
http://emedicine.medscape.com/article/948174-clinical
http://www.biography.com/people/elephant-man-joseph-merrick



Monday, June 1, 2015

Chemotherapy/Radiation and Neurofibromatosis

In terms of Neurofibromatosis, chemotherapy and radiation treatments can be extremely useful for those pesky tumors that may be growing at a fast rate, growing in a location that may be deemed inoperable or used to treat tumors that are causing all kinds of unpleasant symptoms. The "theory" behind using chemotherapy for Neurofibromatosis is the same as it is for cancer... it destroys cells and prevents further growth of unwanted tumors or masses. The use of chemotherapy has been shown to be very effective in controlling the progression of optic nerve gliomas (which are usually benign) as well as malignant peripheral nerve sheath tumors. 

Now, lets talk about how these different therapies work! 

1. Chemotherapy

Chemotherapy is a medication that is most effective on cells that actively growing and dividing. Chemo drugs (which are called cytotoxic drugs) interrupt the cell cycle and slow down or sometimes completely stop rapidly growing cells ability to reproduce. Sometimes only one cytotoxic drug is needed to treat the tumor, but combining drugs will often lead to better and more long term outcomes. The goals of combining different kinds of chemo are: 

a) Killing as many cancer (or NF cells) as possible without harming the other healthy cells that are growing in the body 
b) Increases the chances of killing NF cells 
c) Decreases the chances that NF cells will mutate

Chemotherapy is most often given through an IV, which causes the medication to go directly into the bloodstream. This way, the drug can be carried around the entire body and can be delivered to body parts/systems that need it to fight tumor cells. The type of chemo drug that the physician decides to prescribe depends on factors such as: the person's age, the person's overall health, and the location of the tumor. These drugs may not kill all the tumor cells the first time they are given, and often chemotherapy cycles are continued for periods up to 6 months to ensure that the amount of "tumor death" is optimized!






2. Radiation Therapy 

 Radiation therapy is delivered by using highly specialized equipment, and works by damaging the genes in cells (which are responsible for controlling how fast cells grow and divide). Radiation damages genes by making small breaks in the DNA inside cells, which prevents these cells from growing and dividing. 

As previously mentioned chemotherapy usually exposes the entire body to the cancer drugs, however, radiation is a "local treatment", meaning it treats and affects only the parts of the body that need to be treated. The total dose of radiation given to a patient is typically divided into a number of smaller doses called factions, this is done in order to minimize damage to normal "healthy cells" while maximizing the death of NF cells. 

In order for a doctor to plan radiation treatment, a detailed imaging scan (usually a CT scan) must be obtained so that the tumor can be clearly outlined, and also to map out where healthy cells and tissues are located. During the treatment, it is VITAL that the patient is positioned in the exact same position in order to deliver the radiation to the same location each time. Apparatuses such as head molds, face masks, temporary skin tattoos and skin marks are all used to not only help position the patient, but to also keep them still during the procedure. 






I hope you've all learned something new today, comment below on what you would like to learn about in the future!

Courtney  


References: 
https://clinicaltrials.gov/ct2/show/NCT00030264
http://emedicine.medscape.com/article/1177266-treatment
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0072611/ 
http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/radiation/radiationtherapyprinciples/radiation-therapy-principles-how-does-radiation-work
http://www.cancer.gov/about-cancer/treatment/types/radiation-therapy/radiation-fact-sheet 


Sunday, May 17, 2015

31 Neurofibromatosis Awareness Facts!

May has to be one of my favourite months of the year.... want to know why?! It's NF Awareness month! We should always be spreading awareness and educating others on NF, but is just seems so darn official when it has a title!

In this post I will outline 31 facts about NF, one for each day of the month! So lets get this post to go viral and make sure that we do our jobs and make people aware of this disorder!

1. Neurofibromatosis is classified into 3 different types: NF-1, NF-2, and Schwannomatosis

2. NF-1 affects 1 in 3,000 people worldwide

3. NF-2 affects 1 in 25,000 people worldwide

4. Schwannomatosis affects 1 in 40,000 people worldwide

5. NF is a genetic disorder and is due to a mutation in 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

6. Although NF is genetic, 50% of cases are due to a "spontaneous mutation" of chromosome 17

7. NF is autosomal dominant, which means that people with NF have a 50% chance of passing it on to their children

8. NF is more common than cystic fibrosis. muscular dystrophy and Huntington's.... COMBINED

9. NF occurs equally in males and females and is seen in every race and ethnicity worldwide

10. Cafe-au-lait spots are the most common sign of NF (people with NF need to have at least 6)

                                                               ** Cafe-au-lait spots**

11. Learning disabilities occur in 60% of people living with NF

12. 14-40% of people with NF have optic gliomas (tumors of the optic nerves)

13. Many people with NF have chronic pain due to tumor growth on nerves

14. NF can cause complications in all systems of the body

15. Skeletal abnormalities occur in 10-33% of people living with NF

16. There is a less than 5% chance that an NF tumor will ever become cancerous, however many people with NF receive chemotherapy and/or radiation to help shrink their tumors

17. 1 in 3 people with NF have plexiform neurofibromas

                                                       ** Plexiform Neurofibroma**

18. Many people with NF experience an intense itching sensation to their skin. Doctors are not sure why this happens but a simple antihistamine cream should help relieve the itch

19. It is common for tumors to grow on the iris of the eye (Lisch Nodules) but they do NOT affect a persons vision

20. Most children tend to show symptoms of NF-1  by the time they are 10 years old

21. Most people tend to show symptoms of NF-2 by their late teens, early 20's

22. People with Schwannomatosis show symptoms around 40 years of age

23. High blood pressure, seizures, hormonal imbalances and growth problems occur in about 1% of people with NF

24. One of the distinguishing features of NF-2 are bilateral acoustic neuromas (tumors on both acoustic nerves in the brain) which can cause deafness

25. NF-1 is the most common single gene disorder to affect the human nervous system

26. No two cases of NF are alike... NF affects everyone differently!

27. Visual disturbances can occur in 20% of people with NF because of tumor growth in the brain

28. NF-1 makes up 90% of all NF cases

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. Currently there is no cure for NF other than symptom relief (ex: tumor removal surgery) but as long as we continue to raise awareness, fundraise and do research, I am confident we will come up with a cure at some point in time!


Thanks for taking the time to read this and learn more about NF! I would also like to add that today (May 17th) is NATIONAL NF AWARENESS DAY! So PLEASE PLEASE PLEASE share, comment and like this post, and hey... maybe even go raise some awareness yourselves!

Court



Resources Used:
http://www.ctf.org/Learn-About-NF/Facts-Statistics.html
http://www.nfnetwork.org/be-an-nf-activist/what-is-advocacy/nf-fact-sheet
http://www.ctf.org.au/living-with-nf/what-is-nf/nf-facts-and-stats/
http://www.nfauk.org/assets/downloads/Neurofibromatosis_Type_1_-_a_guide_for_adults_and_families_v1.pdf
http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm
http://www.encyclopedia.com/topic/Neurofibromatosis.aspx



Monday, May 4, 2015

3 Steps to Creating the Life of Your Dreams

Hello friends! Happy NF Awareness month! I decided to kick start this month with a beautiful post written by one of my dear friends Lauren McMurray! I won't give anything away, so make sure to read her blog post and connect with her in the links she has provided for you all! Show Lauren your love and comment and share the heck out of this post!!




3 Steps to Creating the Life of Your Dreams

Whatever you’re doing right now, stop, slow down and just be. Take a deep breath, suck every last bit of air into your lungs, hold it there, just one second longer…and release. Now, how do you feel? Be honest, there’s no right or wrong answer. Just sense whatever comes to the surface and before we get any deeper into what I’m about to share with you, I have one request: be open. If you apply what I’m about to tell you, you can potentially change your life forever. I know I have, so at the very least open your mind to the possibility and let’s begin to unravel the secrets to achieving the life of your dreams.

Step 1: Start with your vision
What do you want most in life? This is a loaded question, I get that, but it is amongst the most important questions that you can answer. If you have a hard time thinking about what you want with the upcoming week, let alone life in general, try taking yourself back a couple of years to the days when you were young and imaginative, when dreaming was encouraged and nothing was out of reach. The goal is to discover your burning desire and have a crystal clear vision of what your ideal life looks like. What does it taste like, feel like, where are you, who are you with, why is this so important to you? See, crystal clear.  

Step 2: Set your intention
Call it what you want - the universe, karma, God, spirit – naming this unexplainable power is not important. What is important is recognizing its existence and understanding that in order to achieve your vision you have to let you intention be known in more ways than one. Write it down, read it first thing in the morning and right before bed, plaster neon sticky notes all over your house, carry it in your pocket, scream it from the rooftops. I’m not kidding! Your intention is going to be the key to attracting what you desire most. Like attracts like, so focus on what you desire, not what you fear.

Step 3: Take massive action
Good things come to those who work and nothing of any worth is going to come easy. Rather than spending days, months and even years getting ready to get ready, start moving now. Short term sacrifice can yield long term benefit, so take action, meditate, journal, exercise and strengthen your toolbox. Grow your mind, body and spirit and never give up. Most importantly, remember, the only way to fail is to quit. 

Don’t quit your daydream. Build it.

With love,

L.

Let’s connect:


Monday, April 20, 2015

Lets Learn About: Scoliosis

Interesting fact of the day.... 10-33% of individuals living with Neurofibromatosis have some kind of spinal deformity! Scoliosis is one of these spinal manifestations, and is one of the most common "deformities" seen in individuals with NF. Scoliosis is a lateral (toward the side or sideways) curve in the spine, which is normally supposed to be straight. Typically, scoliosis is diagnosed between the ages of 10 and 16, and is most commonly seen in females across the globe.

Types of scoliosis:

The most common type of scoliosis is called "idiopathic scoliosis", which means that there is no identifiable cause for the spine to curve (this is the kind of scoliosis seen in NF). There are many theories for potential causes, such as hormonal imbalances, but no research has found a conclusive answer as to what the culprit is! However, there are some other types of scoliosis that have identifiable causes, so lets take a look at them!

1. Congenital scoliosis -- is caused by a bone abnormality that is present at birth, which results from part of the spine not forming properly (this usually occurs within the first six weeks of fetal development). It's common for children with congenital scoliosis to also have kidney and bladder problems, which is due to the way the spine has formed

2. Neuromuscular scoliosis -- is a result of abnormal muscles or nerves, and is frequently seen in individuals with conditions such as spina bifida (when the spinal column fails to close properly) or cerebral palsy (a disorder of movement, muscle tone, and/or posture).

3. Degenerative scoliosis -- is a result from trauma (whether it was injury or illness), bone collapse, previous back surgery or osteoperosis

Signs and Symptoms include:

  • Uneven shoulders
  • One shoulder blade sticks out more than the other (called "winging") 
  • Uneven waist or one hip that is higher than the other 



Diagnosis: 

There are multiple diagnostic tests that can be done to diagnose scoliosis. Many of the physical symptoms listed above are used as diagnostic criteria in the doctors office. Included in the physical exam, the physician will likely perform a neurological check to assess for thing like muscle weakness, numbness, and abnormal reflexes which all may or may not be present in someone with scoliosis. X-rays are the most common imaging test used, and is typically used to confirm diagnostic findings in the physical exam.

Treatments: 

Treatment for scoliosis completely depends on the severity of the curve. Most children with scoliosis have very mild curves, and therefore won't need treatment to correct their scoliosis. Typically, children who have mild curves need to be seen by a physician every six months for a checkup to see if there have been any changes in the curvature of the spine. Guidelines for treatment also depend on things like severity of the curve, location of the curve and maturity of the patient.

Two of the most common treatments for scoliosis include:
1. Braces
2. Spinal fusion surgery

Braces are typically used if a child has moderate scoliosis and is still growing. Wearing a brace will not cure scoliosis or reverse the curve, but it will prevent from the curve from becoming worse. The most common type of brace used is an "underarm" or "low-profile brace". This brace is almost invisible under clothing, and it sits under the arms and extends around the rib cage, lower back and hips.



Spinal surgery is not usually done unless a child's scoliosis is greater than 40 degrees. In spinal surgery, two or more bones in the spine are fused together, so they cannot move independently. Metal rods, hooks, screws, or wires typically hold the fused part of the spine straight to help the new bones fuse together. Surgery is usually preferred when the the child has stopped growing, but special rods that can be lengthened can be inserted in children who are still growing.

There you have it folks, I hope you all learned something new!

Court


References used: 
http://emedicine.medscape.com/article/1260124-overview#aw2aab6b3
http://www.webmd.com/osteoarthritis/guide/arthritis-scoliosis
http://www.mayoclinic.org/diseases-conditions/scoliosis/basics/symptoms/con-20030140
http://www.srs.org/patient_and_family/scoliosis/congenital_scoliosis/