Tuesday, February 28, 2017

Rare Disease Day - 2017

Rare Disease Day is a global initiative to help raise awareness of the prevalence of rare diseases. From the website:
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives...
Idiopathic Pulmonary Fibrosis is just one of many rare diseases that so many of us are living with each and every day. Many rare diseases are deadly, most have no treatment, and all are desperate for funding into research that might help us live better quality and longer lives.

I've written a lot about my rare disease on this blog and have even been featured a time or two by other websites.  If you are interested in learning more about IPF and how it affected me, you can read about it here.

Today I would like to introduce you to my friend Britt.

I first met Britt in person at Stanford MedicineX, where when she "...decided to sit back and let SHIT happen." did more to insert the patient voice into the #OpiodAwareness campaign than any televised PSA could have.

I'll let Britt tell her own story, but want to share things we have in common. With IPF, my body attacked my lungs, now my medications attack my body. The assault by Britt's immune system is widespread, and aggressive. Where my final, accurate, diagnosis took years, Britt's took decades. We've shared a lot since meeting last September and Britt is someone who I look up to and admire.Her post from today went a long way towards helping give me the strength to continue sharing my personal journey, and is something you should read.

What? You haven't clicked the link yet? Head on over and get to know my friend Britt.

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