Happy June everybody!
We hope everyone’s ready to kick off their summer, whatever that may include. This week we have two stories from younger patients who are leveraging their own journeys to spread awareness about rare disease. We also have an article about the cystic fibrosis community using songs, social media, and rigorous campaigning to gain access to a life-saving drug. Lastly, we have an article covering info you have to read if you have PBC and missed the recent PBCer conference.
Sit back and enjoy this week’s Editor’s Choice.
High Schooler Spreads Awareness by Sharing Her Rare Disease Story
PW Contributor Celeste is managing multiple diagnoses– POTS, EDS, MCAS, PCOS– while navigating the halls of high school. She lays out her story and talks about the honest struggle of what it feels like, physically and emotionally, to be chronically ill as a teenager.
Check it out here.
The Road to a POTS Diagnosis and Beyond
PW Contributor Jeremiah spent years searching for answers for his mysterious symptoms. Once he received his diagnosis, he had answers, but it wasn’t the end of the journey.
Read about it here.
Cystic Fibrosis Advocates are Petitioning the UK Government to Fund the Drug Orkambi
What do you do when your government tells you they won’t give you access to the drug you need to survive? You start a movement.
Read about it here.
PBCers 2018 Conference Wrap Up
Experts broke down the current state of research on all things PBC– diets, caffeine, mental illness, and treatment.
Read PW’s coverage of the event here.
