16 posts from August, 2011

Photo of the Week: Newly Diagnosed Patients in Motion

Posted August 31st, 2011 by

For a newly diagnosed patient, organizing a run/walk/bike team sponsored by PatientsLikeMeInMotion can be a way to take action, “go public” and make new connections. Please meet Monkey Mamma, who was diagnosed with epilepsy last year, at the Epilepsy Foundation‘s Stroll for Epilepsy on April 9, 2011, in Dallas, Texas.

Monkey Mamma and Supporter Wearing Bright Blue PatientsLikeMeInMotion T-shirts

Congrats to Monkey Mamma and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall?  Sign up for PatientsLikeMeInMotion today


Scoring with ATEC on PatientsLikeMe: New Feature for Patients with Autism

Posted August 30th, 2011 by

When we expanded PatientsLikeMe from serving a couple dozen conditions to serving several hundred overnight, we realized very quickly that our work was only just beginning. Since that early morning in April, our members (and staff) have added a lot more data to the system, including core symptom groups and commonly prescribed treatment surveys for hundreds of conditions. Last week, we added a new outcome score for Autism Spectrum Disorder (ASD), a rapidly growing population in our community.

ATEC Screenshot

Now, all patients with an Autism Spectrum Disorder (including Asperger’s Syndrome or PDD-NOS) have the ATEC outcome score available on their profile. The ATEC (or Autism Treatment Evaluation Checklist) is a survey developed by the Autism Research Institute to help parents of children with autism record communication, sociability, sensory awareness and behavior.

The saying goes, “if you’ve met one child with autism, you’ve met one child with autism.” Given the heterogeneous nature of the condition, it’s extremely difficult to find two similar patients with autism. That said, on PatientsLikeMe, patients and caregivers can find and connect with others based on a number of criteria, including age and location, individual symptom scores, treatments taken and now an ATEC score that relates to overall level of function.

Below is a screencast featuring the ATEC and the new patient “nugget” for members with an Autism Spectrum Disorder (as well as changes we made to our QuickStart Guide for caregivers).

By receiving scores for each individual component of the ATEC, you can choose which areas you should explicitly target in therapy. We encourage all of our members managing an Autism Spectrum Disorder to take the ATEC to find out more about your condition and how you can improve your outcomes.