4 posts tagged “health social media”

How Social Media Helped Me Adjust to My New Life: An ALS Patient Essay

Posted September 17th, 2012 by

Want to connect with and learn from others with ALS?
Join PatientsLikeMe Now! (It’s free)

“Social media is the MOST important means of socialization, communication and education for patients and their caregivers today, particularly with a disease like ALS where our minds are still sharp and active inside our failing bodies.  Sites like PatientsLikeMe, Facebook and other ALS sites allow me to discuss issues, share experiences, research new treatment options and keep up to date on the latest research.”

ALS Patient Susan Speranza

ALS Advocate and Essayist Susan

This summer, the Mayo Clinic Center for Social Media sponsored an essay contest for patients and caregivers focused on how they use social media.  The prize?  A scholarship to attend the Social Media Summit, held October 15-19, 2012, in Rochester, Minnesota.

36 essays were submitted, more than 11,000 votes were tallied, and ultimately three scholarship recipients were chosen.  While PatientsLikeMe member Susan Speranza (Susan702) was not among the finalists, we wanted to spotlight her inspiring essay about how social media has become an invaluable part of her life since her diagnosis with ALS (Lou Gehrig’s disease) in July 2011.

Here’s an excerpt describing the aftermath of her diagnosis:

“Last year I was given this diagnosis at the age of 47. I was living a busy, wonderful life with my husband and two children, working as a Physician Assistant (PA) and had just started a PhD program in Public Health. Of course when I went to the neurologist’s office that morning, I already knew it could be nothing else: The Dreaded Disease! After spending the last 20 years practicing medicine and several weeks feverishly searching every website I could find looking for a benign cause, I knew it could be no other. My life came to a screeching halt on that day and I spent the next few weeks isolated, depressed, hopeless, wondering ‘Why Me?” and worrying about the tremendous burden I had just imposed on my family. I desperately needed to adjust my ‘new life’ to this ‘new reality’. Fortunately, social media helped with that adjustment.”

Read Susan’s full essay here and follow this budding ALS advocate on PatientsLikeMe and Twitter.

Want to connect with and learn from others with ALS?
Join PatientsLikeMe Now! (It’s free)


PatientsLikeMe in the News: A Roundup

Posted July 18th, 2012 by

Check out some of the media outlets that have highlighted health social networks recently – including PatientsLikeMe and our members.

Social Media a Godsend for Patients with Rare Diseases
PatientsLikeMe is highlighted as a good example in this Chicago Tribune article.

Medical Innovation Needs Silicon Valley Speed, Stat
Fast Company cites us for providing “unprecedented levels of feedback on side effects.”

PatientsLikeMe in the News.  Photo courtesy www.stockfreeimages.com.

How Social Networks Enable Patients to Be More Involved in Their Healthcare
PatientsLikeMe is “at the heart of this shift,” according to this Guardian (UK) article.

Telemedicine Tackles Mental Health Treatment
Our InstantMe survey of how you’re feeling is called out in this Information Week piece.

Match.coms of Clinical Trials Make It Easier to Connect Patients, Researchers
We’re spotlighted as one of the “matchmaking” services that could expedite research.

To see more PatientsLikeMe media coverage, visit our Press page.   To read other articles about Health 2.0 and join the discussion, follow this Twitter hashtag.