4 posts tagged “Lupus Foundation of America”

Taking action for lupus awareness in May

Posted May 16th, 2014 by


If you think you look good in purple, you’re in luck – today is Put on Purple Day, sponsored by the Lupus Foundation of America. As part of the greater Lupus Awareness (Action!) Month in May, today is your chance to make lupus visible and learn about the effects of this chronic inflammatory condition.

Lupus is classified as an immunological disorder by the National Institute of Health, which means that it can affect anything from your joints, skin and kidneys to your heart, lungs and brain.1 Systemic lupus erythematosus is the most common type of lupus, but there are a few other kinds that are much more rare. The cause of lupus is unknown, and anyone can be diagnosed, although it mostly affects women. Some common symptoms of lupus include:

  • Pain or swelling in joints and muscle pain
  • Fever with no known cause
  • Red rashes, most often on the face
  • Chest pain when taking a deep breath
  • Hair loss
  • Pale or purple fingers or toes
  • Sensitivity to the sun
  • Swelling in legs or around eyes
  • Mouth ulcers
  • Swollen glands

Since these symptoms are frequently caused by many other health conditions, you can see why getting diagnosed with lupus can be a difficult process. Many people who are living with lupus don’t even know it yet! 2 3

To help raise awareness for lupus, snap a photo of yourself in purple and submit it to the Lupus Foundation’s Tumblr page. And if you’d like some more ideas for awareness in May, visit the official Lupus Awareness Month page for info on donations, toolkits, quick facts and more.

The PatientsLikeMe team all decked out for Put on Purple Day!

The PatientsLikeMe lupus community is growing, so if you’ve been diagnosed, reach out to the more than 4,000 members who know all about living with the condition. They’re donating health data on treatments and symptoms, and don’t hesitate to ask a question in the forum, either – the community is always up for sharing what they know.

 Share this post on twitter and help spread the word for Lupus Awareness Month.


1 http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp

2 http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp

3 https://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.html


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