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

Susannah Fox

I help people navigate health and technology.

  • Home
  • Writing
    • greatest hits
    • beauty and wonder
    • demographics
    • featured commenters
    • health data
    • key people
    • peer-to-peer health care
    • positive patterns
    • public Q&A
    • trends & principles
  • Research
    • How Young People Use Digital Media to Manage Their Health
    • Digital Health Practices Among Teens and Young Adults: Key Findings
    • Fact sheet: teens and young adults, social media, online health resources
    • Fact sheet: differences between young women and young men in their use of social media, online health resources
    • Pew Research: Americans’ Data Worries
  • About me
    • Now
    • Curriculum vitae
  • Upcoming events

Extremely rare, incredibly typical

February 28, 2014 By Susannah Fox 5 Comments

After nearly 15 years tracking the cultural shifts happening at the intersection of health and the internet, I know a few things.

#1 – don’t get between a parent and a piece of information he or she needs to make a decision about the health of a child.

#2 – from 28.8 modems to the latest smartphones, any piece of tech is going to turn into a medical device in the hands of an e-patient.

#3 – the most exciting trend I’ve seen, by far, is (…drum roll…) people talking with each other. No app, gadget, or site can match the ingenuity and sheer potential good that comes from communication between two or more people who share the same condition.

I learned all three of those lessons while spending time in communities of people living with rare diseases.

That’s why, when Rare Disease Day rolls around each year, I take a moment to say thank you to these amazing people who are, yes, extremely rare, but also incredibly typical. They have taught me that their concerns, strategies, and grit are universal.

Each time I dive down into a community, I come up with the same pearls, from Marfan, McCune-Albright, and Moebius to ALS and cancer. From diseases you’ve never heard of to others that make you shiver in recognition: these people love, live, strive, ask, and answer. They push for better drug discovery. They ask for access to their records. They track symptoms and MacGyver their way out of tight spots.

Spend a little time exploring the world of rare disease today. And say thank you. They’re making health care better for all of us.

Share this:

  • Click to email a link to a friend (Opens in new window)
  • Click to print (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Tumblr (Opens in new window)

Filed Under: peer-to-peer health care Tagged With: Rare Disease

Reader Interactions

Comments

  1. Kate Lorig says

    February 28, 2014 at 9:16 am

    As someone living with a rare disease, gauchers, thanks for recognizing we exist. As a bit of history, we started communicating thirty-five years ago with a cut and paste copied news letter sent by snail mail and continue to do so today with a a quite old yahoo group. You are right, the human touch makes all the difference and BTW, friends.

    Reply
  2. Scott Scowcroft says

    February 28, 2014 at 9:38 am

    And something else that “Rare Disease Day” does.
    It says, “We may not know who you are, but you’re not invisible. We still care.”

    Reply
  3. Rabbi Joseph Aryeh Selevan says

    February 28, 2014 at 3:04 pm

    I have had much success with readily available dietary supplements and various foods. The National Institute of Health has a clearinghouse for complementary and alternative medicine. It seems that in this universe God saw to it that there are natural remedies available for what ails us. It says in Genesis ” and God saw All that he made and behold it was very good”. I do believe in modern science but it seems that there is much yet to be learned and discovered. I have a mild case of Gaucher Disease type 1. Shalom

    Reply
  4. Susannah Fox says

    February 28, 2014 at 9:12 pm

    I spent today at the NIH Rare Disease Day symposium, so please accept my apologies for the slow approval for your comments! It was truly an amazing day — great speakers on the stage, but also great people in the hallways. No group inspires me more than the rare disease community.

    The 8-hour video of the main stage proceedings will be up in a week:
    https://events-support.com/events/NIH_Rare_Disease_Day_2014/page/447

    I learned from every speaker, but esp. appreciated talks by Francis Collins (on a couple of cases which motivate him), Amy Dockser Marcus (on why including patients as full research partners is important), Christopher Austin (on the need to lower costs of rare disease treatments), William Heetderks (on “common devices”), and Ronald Summers (on radiology – some very futuristic stuff).

    I loved meeting some people in person I’ve only known through social media, like Katherine Leon of the SCAD Alliance and Jack Whelan, a blood cancer survivor. Plus I made new friends, like Michael Raymond, whose son was recently diagnosed with a rare condition, and Mary Stojic of the LAM Foundation. Each and every person shared an insight or a story that was keynote-worthy, it was just that kind of a day.

    Reply
  5. Annamarie Saarinen says

    March 2, 2014 at 9:48 am

    Thanks as always Susannah, for your diligence and encouragement of all the rare disease communities work toward. We find each other – and it makes a difference.

    Reply

Leave a Reply Cancel reply

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

Before Footer

Don't miss a post

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

Recent Comments

  • Susannah Fox on A survey about clinical trial support groups: “Hi Diane, here is one article I found about Tirzepatide — a drug that’s in the headlines these days since…” Mar 9, 10:37
  • Diane on A survey about clinical trial support groups: “I’d love to hear about clinical trials of the new weight-loss drugs believed to help people with diabetes and pre-diabetes” Mar 8, 12:15
  • Dave deBronkart on Lessons learned about hospice care: “I want to add some things I’ve learned in the years since you posted this. First, it should be noted…” Feb 20, 16:44

Footer

Follow me on Twitter

My Tweets

Topics

  • Beauty and Wonder
  • Demographics
  • Key People
  • Participatory Research
  • Peer-to-Peer Health Care
  • Positive Patterns
  • Public Q&A
  • Trends and Principles

popular posts

  • Hack needed: Tiny pills, trembling hands
  • Caregiving is not a “career break”
  • Sunflowers turn to each other for help
  • Mystery solved. Again.

Explore

Copyright Susannah Fox © 2023 · WordPress · Log in