Over the past year, I’ve learned that it’s going to be my job to educate my medical team, my friends, my family and anyone who cares about the tumour that made itself home inside my abdomen last year. Some days that’s tough – desmoid fibromatosis can be easy to dismiss, especially because it is technically a benign tumour. Sadly, the fact that it doesn’t metastasize doesn’t mean that it’s an easy beast to deal with. It’s not. Not only are they locally aggressive, but they are known for growing back repeatedly, especially in patients also diagnosed with FAP, a hereditary condition I have thankfully avoided. They tend to strike in key places in the abdomen; in my case doctors were worried about some of the blood vessels, namely the mesenteric artery; just a few inches of growth in that direction and the tumour wouldn’t have been as easy* to take out.
I was especially happy today when I had the opportunity to share a bit about my health journey with two young medical students. A friend of mine, an anesthesiologist and a professor at the McMaster Michael deGroote School of Medicine here in Kitchener, asked me if I would be a subject for an clinical histories class. So this afternoon, when two future medical superstars sat down to listen to my story, they didn’t know what they were getting into!
From the fact that desmoids are found in only 2-4 people per million to the realities of post-surgery chronic pain, these young women listened politely and asked questions; they were engaged in my story. Truth be told, I am always excited whenever a health professional stops and pays attention to the complexities of living life as a desmoid survivor. As I left the lab, I told them that I was happy to have shared my story. They cheerfully replied that they intended on telling all their friends and colleagues about desmoids, and that my story is not one they would forget.
When it comes to rare diseases, there are so many voices that need to be heard above the din. It’s not only about all the ‘normal’ illnesses, the ones we have answers for. Instead we also have to consider the voices coming from the sidelines of our medical system, the voices of those who cannot access the kind of care they need because it may not be invented yet. Unlike many of the larger cancer organizations, foundations for people with rare diseases receive fewer donations, meaning that research funds are often difficult to come by.
Later this year Shandi and I will be travelling to Philadelphia to participate in the annual Running For Answers 5K Fun Run but for now I am so pleased that the Desmoid Tumour Research Foundation has established a Canadian arm for the purposes of taking donations from Canadians, complete with a tax receipt. I’m so glad this option is now there, especially as the latest round of research funding includes a Canadian project.
As you consider your health, your donor dollars, and how you want to make a difference in your community don’t forget that there are many Canadians who suffer daily from rare diseases.
*Easy is, of course, relative. The fact that my bowels had burst in two places as a result of the pressure from the growing tumour made the surgery a race against sepsis and a lot more difficult than it might otherwise have been