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Gaining Knowledge About Neurofibromatosis Empowered Me

By July 25, 2017December 5th, 2023Awareness, NF1, Story of NF

By Kelly Rulle

Recently, I was asked the following, “What’s one “survival tip” you’d like to share with other people living with neurofibromatosis (NF)?” So many things ran through my mind: dealing with bullies, hurtful comments, or painful days, how could I pick just one? But if I had to say just one thing, it would be: learn.

We’ve all been there, you see a new healthcare professional and while going through your chart, they look up and say something like, “Neuro what?” it’s enough to tense the devil!

Back in the day, when meeting a new healthcare provider, I never said the word “neurofibromatosis”, I always said “NF”. It was a test, my way of determining if the person I was speaking to was knowledgeable or not. If they asked what NF stood for, I knew I was dealing with an idiot (harsh, I know!).

Neurofibromatosis has come a long way on the awareness trail but unfortunately, there continues to be a void in the medical community as many still do not know or truly understand what NF is all about. However, if you think about it, isn’t it a bit unrealistic to think that every doctor, regardless of specialty, should know something about every disease and disorder?

Here’s food for thought, what if we viewed these exasperating situations as opportunities, as teachable moments? This is where my tip “learn” comes in and why YOU need to know what NF is all about. You can be the teacher, you can be the smartest person in the room (at least where NF is concerned). Learn all you can about NF, be willing to teach others, and do your best not to get emotional if they don’t get it.

Now that I’m a bit older (and maybe wiser), I am making an effort to be a better partner in my care. When I get into a discussion about NF with an uninformed healthcare provider, I enjoy giving them a brief overview of the condition and how it affects me. More times than not, these exchanges have been positive. And isn’t that the ultimate goal, that interactions with the medical community are as pleasant and productive as possible and do not turn into sparring matches?

Arm yourself with knowledge about NF because knowledge is power; knowledge builds confidence. Confidence will lead to other thoughtful questions and hence, more knowledge. Knowledge will make your doctor appointments more efficient and knowledge will help you pick a doctor that is right for you.

The internet can be a great place to start, stick to reputable science-based websites such as the Children’s Tumor Foundation,, and do your best to steer clear of generic, cure-promising, health websites.

Gandhi is credited with saying, “Be the change you want to see in the world.” While that may sound like an arduous task, it’s quite simple really. If you want others to understand NF then you must start with yourself.

A version of this article ran on The Mighty, a site where people share their personal experiences with disability and disease. To read more from Kelly, visit her blog Write Down the Middle.