Over a decade ago, Innovative Medicines Canada (IMC) spoke with Steven Croucher, a patient diagnosed with neurofibromatosis. This genetic disorder causes tumours and lesions to grow on or within the body where nerves are present. At the age of nine, doctors discovered a tumour located on Steven’s brain stem, in which he required multiple surgeries, chemotherapy and radiation treatment. Upon treating Steven’s brain tumour, he was left with balance issues and neuropathic pain, a type of chronic pain caused by nerve damage.
Today, IMC had the opportunity to connect with Steven once again to learn about how his journey has evolved over the last decade. Read more about Steven’s inspiring story below.
IMC: Can you tell us more about some of the common challenges living with neurofibromatosis (NF)?
Steven: The various learning and social challenges that I encounter in life are more than likely a direct result of neurofibromatosis. However, for me, the most problematic symptom of NF is the chronic pain that I suffer from. Living with this pain is incredibly hard, but I am very grateful that in the last year, doctors have found a medication that drastically reduces my pain. Unfortunately, it hasn’t completely removed my discomfort, but it does help a lot. Before starting this medication, I had a pain level of about 9 or 10, however with this medication the pain is more than often not even noticeable.
Despite this, the challenges and struggles I face in my day-to-day life are quite difficult – working at a job requires speed, multitasking, and organizational skills which have all been affected by NF. I recently went back to school hoping to pursue a nursing assistant certificate however unfortunately, lacked the physical coordination to proceed. People who don’t live with these issues are incredibly lucky. This condition comes with many challenges and can influence your psychological outlook on life; however, I always do my best to take things “one day at a time.”
IMC: How has research and advancements in medicines evolved for your condition since the last time we spoke in 2012?
Steven: Research has helped a lot with managing my chronic pain as a result of NF – it was able to find me a combination of medications that made living with this pain much more tolerable. I was 17 years old when we last spoke and I am now 27, I am still young, so it is important that I am capable of working while on medication and these medicines enable me to do that. Of course, more research is always needed and encouraged, chronic pain has major implications for the individual suffering from it and for family and loved ones of someone who has to face this pain every day.
IMC: What do you hope to see change in the next five years in regard to Canada’s current health system for individuals living with your condition?
Steven: In the next five years my hope is that we are able to create more space for innovation in medicines and implement stronger supports that enable people like me to live a life that is more “independent.”
In Canada, there is oftentimes a stigma associated with certain drugs, and why people may need them. Although I am a pretty “normal person,” I still have pain and without access to my medication I’m not too sure I would really be capable of doing much. I try and avoid saying what medication I’m on because of the stigma that comes along with it. I hope that one day, I will be able to live completely pain-free without any of the social and psychological repercussions that come along with my condition.
Here’s to also hoping that further education, research and supports can be implemented for people living with conditions similar to mine!
