2 posts tagged “alone”

#NotAlone Recap: On PatientsLikeMe, no one is alone…

Posted October 16th, 2015 by

As our #NotAlone campaign wraps up, we hope you’ve been encouraged by the thoughts and personal stories of how other members have felt less alone by learning, connecting and tracking on the site.

We recently had a look at all the member posts in the #NotAlone forum and wanted to share some highlights with you!

 “I feel less alone coming here; it also helps me keep track of things in a way I never could before … It helps to know others truly understand, as someone who hasn’t ‘walked in our shoes’ cannot fully understand.” – member living with MS

“…we all belong to a group where we have many similar experiences, where physical chronic pain seems to be one of the overwhelmingly major characteristics of what we all experience. That bonds us together as nothing else can. It does make me feel like I’m not alone, that none of us are alone as long as we have each other.” – member living with Fibromyalgia

“I have learned more here than I ever imagined possible and I have made friends. Good quality friends that really understand. I have shared with them and they have shared with me … I have learned there is power in numbers.”  – member living with MS

You can always revisit the #NotAlone forum threads to see more of what people said, and keep sharing your own stories whether in the forums or on your profile. Remember, you can help someone just like you see they’re #NotAlone every time you reach out to others and share your own real-world experiences.

#NotAlone, together.

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#NotAlone: On PatientsLikeMe, no one is alone

Posted September 14th, 2015 by

Our co-founder Jamie Heywood calls it “the big idea my brother inspired.” A community of people learning from each other’s shared health experiences, connecting with people who get what they’re going through, and tracking their journeys to inform new research and help others understand what might work best for them. That is PatientsLikeMe, and that is what Stephen Heywood inspired.

Today, more than 350,000 members are part of the community, and through learning, connecting and tracking, they are #NotAlone.

Over the next few weeks, we’re launching the #NotAlone campaign that’s all about how members continue to learn from and support one another through life-changing conditions.

What can you expect to see from #NotAlone?
We’ll be featuring some inspirational stories to show how members have felt less alone on their journeys. Here’s a preview into the #NotAlone experiences of Letitia, Nola, and Geof:

  • After Letitia learned about an epileptologist on the site and discovered she was a perfect candidate for surgery, she’s been seizure free for 3 years.
  • When Nola’s multiple sclerosis kept her from accessing her shower, Gary, a member she connected with in the forum, stepped in to help from 3,000 miles away.
  • Geof uses Adderall to combat multiple sclerosis fatigue, but, three days before his prescription was up, his insurance company denied the claim. He turned to the community and everyone who had tracked their own experiences with Adderall.

How can you get involved?
Share your own #NotAlone stories – whether in learning, connecting or tracking. Visit the forum to chat about your experience or chime in on Facebook or Twitter using #NotAlone.

And don’t forget to continue adding your data and experiences on the site. Every piece of information can help change medicine for the better and show someone else that they are #NotAlone.

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