I want to begin by apologizing for my social media post yesterday, which unintentionally prompted an outpouring of messages and concern. When I couldn’t respond right away, friends even checked in with Rich. I am incredibly lucky and deeply grateful to have such a caring community and amazing friends who continue to support me on this journey. And again, I’m truly sorry for causing worry.
Yesterday marked a long-anticipated appointment at the Neurofibromatosis (NF) Clinic — the only one of its kind in Canada. I’m still adjusting to a diagnosis I received last February, and walking into that clinic felt both daunting and grounding at the same time.
Learning that I have likely lived with neurofibromatosis (NF1) my entire life has been a lot to absorb. Looking back, there were signs — several of them — that went unnoticed for years. I had asked numerous doctors and dermatologists why I had what I now know are tumours all over my body, both under the skin and above it. The lack of answers was frustrating and, at times, disheartening. It wasn’t until I walked into a new dermatologist’s office last February that everything shifted. The doctor took one look at me and said the words that would change so much. A biopsy of one of those tumours was done that same day to confirm his diagnosis.
Since then, I’ve been living with a constant mix of overwhelm, fear, and unanswered questions. I am profoundly grateful that this clinic exists — and that it exists here at home. Having a team that truly understands this disorder matters more than I can put into words.
The Weight of the Unknowns
Because NF1 is a genetic disorder, the past year has also been filled with research, testing, and difficult questions about whether this gene was passed down to me — and whether I may have unknowingly passed it on to my children.
Living with that uncertainty has carried a heavy mix of fear and guilt. Some answers are still inconclusive, and learning how to sit with that uncertainty has been one of the hardest parts.
During my visit, I met with three different doctors.
The first conducted a thorough physical exam along with neurological testing. The second walked me through next steps, including referrals to several other specialists and additional testing.
As I shared months ago, one of those tests is a brain MRI — something they want done yearly, and need a baseline to start. It was scheduled back in November for this coming October, which not only feels like an eternity, but is an eternity away still. I was encouraged to keep calling in hopes of getting a cancellation appointment sooner, which I did and will continue to do. To put it into perspective, the doctor explained that they follow roughly 500 patients who require annual MRIs, in addition to all other hospital referrals, so the backlog is significant.
The final appointment of the day was with a genetics specialist. She carefully reviewed my family history, went through my blood work from last month, and explained that I will be referred for further testing. One of these tests is a specialized blood test that requires approval from the Ministry of Health, as it’s sent to the United States. At the moment, these requests are being blocked (by you know who 😩), adding yet another layer of waiting and uncertainty.
There is no cure for neurofibromatosis. At this stage, it’s about management — yearly check-ins, monitoring growth, and addressing issues as they may arise. The tumours will continue to grow, but the hope is that they remain manageable for me, as long as they don’t land in any danger zones.
One final question I asked — one that has been weighing on me for some time — was why the tumours seem to have grown faster and more aggressively over the past five or so years. The answer surprised me, but also made sense: they believe hormonal changes and menopause may be playing a role.
Yesterday took a lot out of me — physically, emotionally, and mentally. I was incredibly grateful to have Rich there with me throughout the day, grounding me and reminding me that I don’t have to carry this alone.
I’m still processing everything. Still adjusting. Still learning how to live with this reality or future reality. But I wanted to share this part of the journey — honestly, imperfectly, and with deep gratitude for everyone who continues to hold me up.
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YouAreEnough 