I started my blog and sharing my story because of the isolation I felt, the intense silence I felt around rare disease in my daily life.
Hopefully I have helped a little and will continue to shrink the silence for those who read my story.
In my own experience, since sharing my story and joining the online social community, I feel like the silence has shrunk for me.
I know that others are going through similar things as me, both those with my illness (familial adenomatous polyposis and desmoid tumours), but also those with other chronic illness, rare disease and cancer. No matter what you’re going through, the impact can physically and emotionally can be empathised with and that’s so powerful and empowering when you feel like you’re all alone in it.
There’s also been more noise on getting treatments for rare diseases funded and into clinical trials recently. The Desmoid Tumor Research Foundation fighting for our voice in the research arena and smaller pharmaceuticals are picking up promising treatments for desmoid tumours for clinical trials.
Then there’s the drug I’m currently on, a type of gamma secretase inhibitor. Initially the stock I was provided with expired this year, but at my last appointment I heard that they will continue to make it for me. That’s just the kind of news that I love to hear. When I first was diagnosed with a tumour and it was a huge scramble to stop it taking over my body, I never thought I would say that I’ve been on the same drug for over a year and it’s continuing to keep my tumour stable.
Finally, through sharing my story and seeing how other amazing people talk about their experiences, I’m more open with my family and friends, and in outer circles like work colleagues.
The silence has been shrunk but there’s always more that can be done so here’s to making even more noise about rare disease!