Shrinking the Silence

Sharing a voice on living with rare disease

Another year of being rare — February 28, 2018

Another year of being rare

Today is Rare Disease day. Last year on this same day was the first time I shared my story on social media and I can definitely say I’ve never put myself out there like that before, but I’m so glad I did because in the rare disease and chronic illness community, we need as many voices out there. I’ve also learnt more about myself than I could have ever imagined at the same time.

The hashtag for this year’s Rare Disease Day is #ShowYourRare.

Here’s what my rare looks like in a year:

  • Close to 50 regular blood tests, then add a few from hospital stays
  • My portacath accessed close to 50 times for IV treatment
  • Give or take 30 hot and humid summer days struggling to stay hydrated with no colon – the struggle is real
  • Unknown impact on my fertility
  • 6 day procedures
  • 2 new doctors making it a total of 6 specialists I regularly see
  • 1 amazing treatment with no name, keeping my desmoid tumour stable with next to no side effects, and all thanks to research.

Research also happens to be the theme of 2018 and is so important for rare diseases. Trial and experimental drugs, like what I’m on at the moment, offer so much hope for diseases like desmoid tumours where the treatment path isn’t as clear cut because there aren’t enough patients to base success rates off.

This year I will need to rely on research and other options once again because the stock of the drug I’m currently on expires this year.

I am also so lucky that my rare also looks like this:

file (2)

I have my challenges but my rare disease was caught in time to be treated effectively and not reactively, and I can continue to live a full life.