12 posts from October, 2012

Leaving a Legacy of Data at PatientsLikeMe

Posted October 30th, 2012 by

ALS member Persevering in front of the US Capitol, where he was participating in ALS Advocacy Day 2011.Recently, our ALS community mourned the loss of Persevering, a highly proactive three-star member who was known for his unfailing efforts to support fellow patients, record and share data, report website problems and recruit ALS clinical trial participants.  Offline, he was also a tireless advocate for ALS awareness and research, attending conferences and lobbying on Capitol Hill.  Persevering passed away on September 10, 2012, at the age of 42, and is deeply missed by both our members and our staff.

While we are unable to recognize every member who passes away on our blog, we wanted to take this opportunity to highlight how our community responds to loss as well share what happens to a deceased patient’s profile data.  When our community managers are notified of a member’s death – typically by a family member, caregiver or another member who was close to the person – they add the date of death to the member’s profile. This automatically updates their icon nugget with a black band to show that the member has passed away. (See image below.)

Persevering’s icon nugget – with the black band representing that he’s no longer with us after his three-year battle with ALS.

Also, our members often create a forum thread about the member, to which the tag “In Memory” is added by other members or the community manager so that it is searchable and “followable” using this tag. In these emotional threads, members acknowledge the deceased member’s contributions, reflect on the loss to the community and pay their respects.  Essentially, it’s a place for remembering a friend, telling stories, supporting one another, sharing funny memories and sending condolences to the family.

Each month, our community managers update our “In Memoriam” thread in the PatientsLikeMe forum with a list of members who have passed away during the previous month, and they include links to each profile. That way, members who haven’t logged on for a while or may have missed the news of someone’s passing can stay up-to-date.  Members can also choose to “follow” that thread if they wish to be notified whenever there is a new monthly update.

As for the profiles of members who have passed, they effectively create a legacy of data on our site, as their profile pages remain accessible to our members in perpetuity.  As a result, present and future members may continue to access these profiles to compare and learn from similar experiences.  Persevering’s detailed treatment, symptom and disease progression data, for example, will live on as a rich source of information and insight for other ALS patients.  What was his experience in the Phase II Study of NP001?  Read his comprehensive treatment history here.  What side effect led him to stop taking Riluzole?  Find out here.

Persevering’s Functional Rating Scale (FRS) data, showing his ALS progression over time.

So as you can see, Persevering is still helping others today, and we thank him for that.  We also want to recognize his contributions to our recent publication about NP001.  We have dedicated this new work to him as it was inspired by his keen desire as a “citizen scientist” to analyze and understand the impact of NP001 on his ALS progression.

As a result of these myriad achievements, Persevering will be posthumously awarded the Stephen Heywood Patients Today Award at the 8th Annual ALS Therapy Development Institute Leadership Summit on November 1st in Boston. Learn more about this beloved and influential ALS advocate by checking out the Facebook page created in his honor, entitled Persevering – You Are a Game Changer.


Putting Psoriasis on the Map for World Psoriasis Day

Posted October 29th, 2012 by

Today, October 29th, is World Psoriasis Day, sponsored by the International Federation of Psoriasis Associations.  Here in the US, the National Psoriasis Foundation has created a special website – WorldofPsoriasis.com – for the occasion that illustrates the global nature of this chronic autoimmune disease, which affects 125 million people worldwide or nearly three percent of the world’s population.

WorldofPsoriasis.com's Interactive Map of Psoriasis Patients Around the Globe.  Click Each Red Pin to Find Stories, Photos and Videos.

Now those living with psoriasis and psoriatic arthritis can “get on the map” by adding a clickable pin for their location that shares their personal stories and photos.  The goal is to get psoriasis patients everywhere to proclaim “I have psoriasis” while also learning about others like them around the globe, such as Arvin O. Ravalo from the Phillipines, Saraswati Gautham from Nepal and Dr. Andres Felipe Jiminez Morales from Columbia.

What are the physical and emotional challenges of psoriasis?  Earlier this year, PatientsLikeMe interviewed four members who are blogging about life with psoriasis in order to shed light on this highly visible and often misunderstood disease, which affects as many as 7.5 million Americans and is the most common autoimmune condition in the US.  Check out our insightful interviews with:

  • Lissa of “Psoriasis Girl’s Point of View”
  • Alisha of “Being Me in My Own Skin”
  • Jessica of “Jessica and Psoriasis”
  • Joni of “Just a Girl with Spots”

Common Psoriasis Symptoms Reported by PatientsLikeMe Members.  (Click Through to See the Full PatientsLikeMe Condition Report.)

These four brave ladies are just the tip of the iceberg, however.  2,470+ patients are sharing their experiences with psoriasis at PatientsLikeMe – including how it affects their quality of life and what percentage of their body is affected – while 840+ patients are sharing about their psoriatic arthritis as well.  Get to know our growing psoriasis community and check out the results of our recent psoriasis patient survey about the impact of summer weather.  Also, don’t miss our upcoming blog post about the five different types of psoriasis!