• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Susannah Fox

I help people navigate health and technology.

  • Home
  • Rebel Health
  • Blog
    • greatest hits
    • health data
    • peer-to-peer health care
    • public Q&A
  • About me
    • Bio
    • Now
    • Curriculum vitae
  • Events

Waiting with open arms

December 4, 2017 By Susannah Fox Leave a Comment

Waiting with open arms

I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes.

Emily Kramer-Golinkoff at Medx by Christopher KernEmily Kramer-Golinkoff, in response to “A field guide to The Diagnosis Difference” (2013):

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:

Featured image: DrupalCon 2017 crowd waving at the photographer, Michael Cannon. Emily’s photo was taken at Stanford Medicine X 2012 by Christopher Kern.

Filed Under: featured commenters, peer-to-peer health care Tagged With: cystic fibrosis, Emily Kramer-Golinkoff, Stanford Medicine X

Reader Interactions

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Footer

Explore

Don't miss a post

Enter your email address and receive notifications of new posts by email.

Topics

  • Seekers
  • Networkers
  • Solvers
  • Champions
  • Health Data
  • Peer-to-Peer Health Care
  • Public Q&A

Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12
  • Anonymousity on Rare Disease in the NYT: “I was captivated by Amanda Hess’s story. I too dove right in in reading all the way through the article…” Apr 25, 09:24
  • Susannah Fox on Rare Disease in the NYT: “Thank you, Dave! Yes, I’ve been a fan of Hess’s writing for a long time and now, well, I’m a…” Apr 23, 22:00

Copyright Susannah Fox © 2025 · WordPress · Log in