Shrinking the Silence

Sharing a voice on living with rare disease

Reflecting on my rare disease journey — July 4, 2018

Reflecting on my rare disease journey

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.

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Feeling empowered as a young patient — April 12, 2018

Feeling empowered as a young patient

I often write and think about how unfair it is to face such health challenges in my 20s when I should be at the prime of my life. It was also my young age that almost didn’t get me diagnosed in time to have preventative surgery. I was too young to be considered to have cancer, instead I was just not exercising enough and needed to improve my diet.

On the flip side, I feel that my age has really contributed to me getting such great care and having doctors, nurses, allied health, secretarys, admin staff go the extra mile to make my life easier and digging for treatment options that factor in how much life I have ahead of me.

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