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 


  1. Are things getting any better? Do you meet new doctors today who have heard of NF? Maybe informing the health profession about NF will become your full time nursing gig?

  2. I think it is completely dependent on who you see and what the issue is that needs to be fixed! I've had several doctors who have very very basic knowledge on Neurofibromatosis, but rarely do they have education on some of my more complex issues! And that's my goal with my nursing career... someday I would like to open a clinic to help treat patients with NF!

    1. We do need a clinic or NF navigator. As the executive director of the Manitoba NF support group, I receive calls beyond support issues. I would love to ease those in need by directing their medical questions on to an NF navigator. They could fields the calls and know the best NF specialist for whatever NF symptom or issue is required.
      Let's HOPE to fill that gap in the future!
      Tracy Gregorash

    2. Agreed! An NF clinic is very much needed! I want to take my nursing career in that direction sometime in the future... open a clinic or start a program where patients can be connected to appropriate physicians and receive proper care!

  3. excellent post, Courtney!

    We never say "no" when a doctor asks if they could bring a resident in for an appointment. The more the younger generation of doctors meet and see those with NF, the less will be those doctors who have never seen it.

    Remember that it is a relatively recently "discovered" disorder and theoretically, each doctor would have to see 3000 patients before ever meeting one with NF. And how many of those would be severe cases? And how many NF specialists are there in all of Canada? Very few...

    I agree wholeheartedly that the education of doctors should begin when they are in school and that NF deserves more than 3 sentences in a text book.

    and I completely agree with Tracy that an NF clinic is needed (in each province!) to coordinate and facilitate care as NF is such a multi-faceted disorder needing many specialists.

    They are making great strides down in the US fund raising and advocating for NF. I encourage you to get in touch with the Children's tumour foundation and see where your efforts can best be placed.

    and if those associated with NF do their part in advocating, we can all help with those baby steps!

    1. Wow! Thank you so much for this perspective! I never really thought of it that way... that each doctor would have to see 3,000 patients to even get one with NF! And you're right, since majority of cases are "minor" the chances of them seeing a severe case is pretty slim! Thank you so much for your input :)

  4. 6 billion vs. 15 million is actually 40000% more funding for breast cancer research than NF research. However, stated the other way, NF received 0.25% of the funding that breast cancer does, which is how you probably calculated your percent. So while I agree with your point, I feel compelled to point out the math.

    1. Ahh thank you for pointing that out! I guess that's what you get when you try to do math AND write a blog post after a 12 hour night shift! Thank you :)

  5. I agree with doctors not knowing about it. I ALWAYS welcome students to come in with my doctor anytime he has one just to show them NF because many only get a textbook glance at it and most times a picture is not included. With that being said, whenever I subbed at different schools for a biology or genetics teacher I looked in their books for NF. I was saddened by what I saw in the genetics book when it said that NF causes (only) internal tumors not in one, but two different places! The tumor growth is both internal and external. I made it a point to offer to the teacher to give a talk about NF and have done so twice and looking forward to doing it again this school year. Who knows maybe one of the students in one of the genetics classes will one day find a treatment to halt the progression of the disorder in an individual.

  6. My 5 yr old son has nf1 I had never even heard of it before this. We go to stollery and many times I have 2 or 3 doctors in the room and I'm Telling them what I know. If you ever need some help raising awareness or money please let me know.