Monday, May 2, 2011

Happy Lupus Awareness Month!

May is Lupus Awareness month!  May 10 is World Lupus Awareness Day, which was first celebrated back in 2004.  Lupus is a misunderstood disease- the most common response I get when I talk about my disease is "Oh.  What is that?"  Thankfully, the Lupus Foundation foresaw this problem and created a list of Lupus facts that I shamelessly stole from their website.

  • Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
  • Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
  • Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
  • It is believed that 5 million people throughout the world have a form of lupus.
  • Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
  • Women of color are 2-3 times more likely to develop lupus.
  • People of all races and ethnic groups can develop lupus.
  • More than 16,000 new cases of lupus are reported annually across the country.

This Lupus Awareness month is pretty awesome, given that there have been some amazing breakthroughs since last year.

The first drug created specifically for Lupus started getting some buzz.  Benlysta is the first new Lupus treatment in 52 years!  The FDA approved this drug on March 9,2011.  For years, Lupus patients have been struggling to manage Lupus symptoms using a variety of different cocktails.  Anyone remember the days of Vioxx?  Turns out Vioxx attacked internal organs faster than Lupus,so, uh, no bueno (Getting closer to Cinco de Mayo!).  I use the same handful of pills that many Lupus survivors do- hydroxychloroquine (an anti-malarial drug) for joint pain, fatigue, and muscle weakness, gapapentin for nerve pain, and a nice helping of Tylenol, ibuprofen, and the occasional Vicodin/Norco/Morphine/etc. to handle the pain that sneaks in around all those other drugs.  Then, of course, steroids for intense flares- meant to calm our immune systems the eff down!
Click here for more information and the Lupus Foundation info page on Benlysta.
So, this is a pretty exciting Lupus Awareness month.  Check out all the cool stuff you can get to help raise awareness:

  • Shirts
  • Wristbands
  • Magnetic Ribbons to stick on your car, your friends' cars, and strangers' cars*!
  • Totes (Everyone likes totes)
  • Hats
  • Books (Meh)
  • Mugs
  • Cell Phone Charms (How do you attach one of these to your phone?)
  • Balloons (To fill with Helium, inhale, and make yourself sound funny.  Laughter takes away from joint pain**).  
The Lupus Foundation Store is your one-stop shop for all this cool stuff.

Now, I know we said that we should band together while we wait for FDA approval, but I think we can rock these sweet purple wristbands for the month of May too, right?  Right.

*I probably shouldn't suggest blanketing your town's vehicles in the purple ribbon magnets, but it would raise awareness for sure.  Hell, we painted Sacramento purple to save a mediocre basketball team.  No offense to fans.  
**I think you're not supposed to suck helium.  Maybe I should look it up.  Eh, I'll just say people under eighteen shouldn't do this.  

How will you raise awareness?

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