I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes.
My advice to a person or parent of a child newly diagnosed with Cystic Fibrosis would be:
“I can only imagine the devastation of getting a diagnosis of CF for your child. Coming to terms with the diagnosis is a process — it is gradual and it unravels in different ways and on different timelines for everyone. Just know that there’s a thriving, loving, supportive and incredibly knowledge online community of people with CF and those who love them. It is made up of people who have been there before as well as those going through it at the same time you are. They are waiting with open arms. Know it and use it if or when you need it. For me, it’s been an absolute lifeline.”
Watch Emily’s talk at Stanford Medicine X: