Ask anyone about the challenges of living with a chronic condition, and I bet they will tell you that at least once they have struggled with navigating the health care system. Balancing appointments, tests, follow up visits, lab work, procedures, even just learning medical terminology is a daunting task. Who orders your lab work? Which specialist refills your prescriptions? It can all seem so overwhelming if you’re new to, or unfamiliar with the ins and outs of health care and there is no expert or clinic to turn to.

Let me just preface by saying this: I have received excellent medical care since my diagnosis of neurofibromatosis, and I am grateful for all of the kind hearted, talented and resourceful physicians I have had the chance to work with. However, I have faced my fair share of frustrations and struggles over the years that I think could have been prevented if a specialized team had been in place.

A neurofibromatosis clinic would provide competent and comprehensive medical care to NF patients such as myself. There have been countless times that I have had to explain my condition to physicians, which is frustrating and completely time consuming. It adds another layer of challenges to living with a complex health condition when doctors look to the patient for expertise and guidance. Could you imagine taking your loved one to a medical appointment and having the doctor ask you what to do? That is what it’s like for every patient with NF living without a clinic. While NF is common, it is not common enough for most family doctors to be knowledgeable in providing specific care.

About a year ago while I was at work, I asked one of our medical residents if they happened to know what Neurofibromatosis was. She looked at me, paused and said, “I know what it is, but only at a very basic level. We only got a half hour lecture on it in school.” I was shocked. Half an hour for a condition that has taken me over 20 years to begin to understand?! It’s really not that surprising that I have been met with such unease and uncertainty in the past. Again, I feel like an NF specialty clinic would help amend those feelings.

At a recent doctor’s appointment, I went in with some concerns about new symptoms I felt were attributed to one of the new medications I was on. I was told that I actually was not reacting to the medication I was on, but I had an entirely new condition that I apparently was not aware of. This was all based off of me being in the office for less than five minutes, and me having one symptom of this alleged condition. I was prescribed a medication (one that can have some serious, life altering side effects) to take three times a day, and was sent on my way. Most patients would have blindly accepted this as the truth, and carried on following doctor’s orders. However, I knew that this was not what was going on with me, and that something needed to change with my current medication regimen.


After I had a discussion with another specialist about the symptoms I was experiencing, he agreed that it was a side effect of my medication and promptly switched me to something different. In less than 24 hours, I was feeling the best I had in months. I feel like this was an oversight in my care and if there had been a clinic in place that was familiar with my case and my condition, I wouldn’t have had to endure this incredibly frustrating experience.

People living with complicated medical conditions often spend hours researching, learning, and relentlessly advocating for themselves so they can receive the best medical care. A neurofibromatosis clinic would change this. It would give people a place to go to get their questions answered and their concerns clarified. A clinic would provide a sense of community for people dealing with this condition. Most importantly though, patients utilizing this clinic would not be met with apprehension or uncertainty regarding their diagnosis. They would be empowered with knowledge, and the anxiety that permeates each day would be alleviated with the understanding that a team of knowledgeable medical specialists are looking after them.

Courtney was diagnosed with Neurofibromatosis Type 1 at the age of 3. She currently lives in Red Deer, Alberta and work as a Registered Nurse in labour and delivery. In her spare time, she loves to explore the mountains, garden and blog! She also sits on the board of directors for the Alberta Tumour Foundation and loves raising awareness for neurofibromatosis.

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