8 posts tagged “one for all”

Join the Band: Raising Our Voices for Lupus Awareness

Posted May 10th, 2011 by
“I was diagnosed with lupus (SLE) at age 20 and had already lost about 60% of my kidney function. I had chemotherapy for nine months along with intense steroid therapy. I thankfully went into remission and have been since four months after my diagnosis. I still struggle with fatigue and kidney problems although I was transplanted in 2004. I will need another transplant most likely within the next year or two.”

Lupus patient, age 30

Lupus Foundation of America

May is Lupus Awareness Month, and today, May 10, is World Lupus Day.

Since PatientsLikeMe began welcoming all patients last month, we have quickly become home to more than 100 members with systemic lupus erythematosus (SLE), the most common form of this chronic autoimmune disorder that can affect any organ system in the body, including the heart, kidneys, lungs, joints and skin.

Here are some quick facts about SLE gleaned from our new members.

What is the gender breakdown?

What are the top treatments?

What are the major symptoms?

What can you do to increase awareness about lupus?   One very visible sign of support is wearing a wristband.  At the Lupus Foundation of America, the theme for this year’s awareness month is “Band Together for Lupus,” complete with accompanying purple wristbands.  You can also send an awareness e-card and download a flyer and logo for World Lupus Day, which you can then post on Facebook or other social media sites.

Finally, you can click here to sign the World Lupus Day pledge and watch a video featuring spokesperson Julian Lennon, the son of John Lennon.  He explains how the Beatles’ famous song “Lucy in the Sky” was written about his childhood friend Lucy, who passed away from lupus.

PatientsLikeMe member emorgan


One for All (Video): The Road Ahead at PatientsLikeMe

Posted May 9th, 2011 by

“We’re just getting started on a long road to really impact your individual disease and your quality of life…”

Each week this month, we’ll be posting a video interview with a member of the PatientsLikeMe executive team.  You’ll hear from Ben Heywood, Jamie Heywood, David S. Williams and Paul Wicks, Ph.D. about what the recent changes to PatientsLikeMe mean for patients, research, industry and the entire medical establishment.

Today, listen in to hear what Ben has to say about why we’re on this “road,” what has been improved with the recent upgrades and how sharing your own health journey moves us forward.  You can also see last week’s video teaser here.