Philippa Thomas Online

Occasional thoughts about life, books and news.

Facebook empowering patients with rare diseases

3 Comments

Here’s another example of social media making a difference – well beyond the “feel good” boost of knowing you’re not alone out there. I helped fix up this piece for Nancy Shute of NPR on the way that patients with rare diseases are sharing information, advice and contacts online. Only last week, women with the rare lung disease LAM or lymphangioleiomyomatosis, came together via Facebook to help a very scared young woman with little English and a new, terrifying diagnosis. If you listen to her story and want to know more, do visit the LAM Foundation. I’m biased. I have LAM, and I want a lot more people to have heard of it, so more women are diagnosed early, and get to live.

Author: philippathomas

I've been a BBC newswoman for 28 years: reporting from around the world. Currently to be seen anchoring BBC World News TV. Main interests - politics, diplomacy, tech, media, arts and all things American. I began this personal blog as a 2011 Nieman Journalism Fellow at Harvard. You can also find me talking daily news on Twitter at @PhilippaBBC, and sharing anything from travel photos to my year in books on Instagram at @philippanews. Thanks for reading!

3 thoughts on “Facebook empowering patients with rare diseases

  1. I think I may have left out a vital link. You can visit the LAM Foundation at http://www.thelamfoundation.org/about-lam.html . Thanks as ever for reading my blog.

  2. How do I get involved with other patients with LAM disease.I was diagnosed with LAM in 2009.

    • Dear Julie do you want me to put you in touch with Peggy who administers the Lammies Facebook page? It’s a brilliant virtual support and advice community. Also – are you in the US ?- the LAM foundation folks are superb and have excellent relations with the leading medical researchers in our field. You are NOT alone. P

      Sent from my iPhone

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