“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
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?
- 96% of our new SLE members are female, and 4% are male, which fits with research showing a much greater prevalence of the disease in women.
What are the top treatments?
- The most widely used prescription drugs reported by our SLE patients include , Hydroxychloroquine, Mycophenolate, Tacrolimus (Prograf) and Pregabalin (Lyrica).
- The top supplement reported by our SLE patients is folic acid, while chiropractic is the number one physical therapy cited.
What are the major symptoms?
- The five most common primary symptoms reported by our SLE patients include Anxious Mood, Butterfly (Malar) Rash, Depressed Mood, Fatigue and Insomnia.
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.