Lupus? Sorry….Never Heard of it.

In the left margin of my blog, I added some funny pictures of myself “thinking” of ways to increase Lupus awareness. While the pictures might be comical (well, I hope you thought they were comical…!), increasing Lupus awareness is no laughing matter.

For the most part, when I mention the fact that I have Lupus to others, they politely nod, show some sympathy, and apologize that I have to go through difficult times. It’s extremely obvious that 9 times out of 10, they have absolutely NO idea what Lupus is. When I started noticing this, I started adding a brief explanation of what Lupus is when I tell people that I have it.

While I don’t expect everyone to know every disease there is out there, let’s discuss some Lupus facts.

• Lupus affects 1 in approximately every 2000 North Americans and over 2 million people around the world
• SLE (Systemic Lupus Erythematosus 8-10 times more common in females than males
• It is estimated that Lupus affects approximately 50 000 Canadians, yet most people won’t have heard of it unless a family member of a close friend has it
• Lupus can affect anybody, however it is more commonly seen in females who have reached child bearing age and is more commonly seen in African Americans, Asians, Native Americans, and Latinos

While these statistics are quite eye opening, the statistic that gets me the most is this:

Lupus affects more people than AIDS, cerebal palsy, sickle cell anemia and muliple sclerosis COMBINED!!!

That being the case, why is it that you’d be hard pressed to find someone who hasn’t heard of Aids, cerebral palsy, sickle cell anemia, or multiple sclerosis? Why doesn’t anyone know what Lupus is?

My sister has MS. I can’t count the number of times I’ve gone outside to grab the mail and there has been a package for her from the MS Society. I don’t know exactly what is in those packages as I’ve never asked, but one thing I do know for sure is that one of the things in there is a gorgeously soft and warm fleece blanket. She has 2, one dark blue one and one red one.

Now, It’s not the fleece blanket per se, but it does hurt my feelings a bit that there aren’t wonderful packages coming in the mail for me from Lupus organizations. Now I don’t blame Lupus organizations. Not in the least. To me, it’s simply the fact that there simply isn’t enough awareness. When I was younger and still under the care of sick children’s hospital, it didn’t matter what disease or ailment you had. You still received things to make you happy and lift your spirits. As soon as I “graduated” to a “big girl hospital”, that support disappeared. I know that children need support and other things to take their minds off of their ailments. But….so do I! I’d love to have an event whereby a bunch of 20,30,40-somethings with Lupus were able to go somewhere and get some spa treatment, or a makeover, or something like that. Perhaps even dinner or a show.

I think the main and probably number 1 priority of people with Lupus is to find a cure. But wouldn’t it be nice to have some sort of free event, outing, etc that’s just for us? It’s almost as if we shouldn’t want or desire fun stuff anymore because we’re no longer children or teenagers. I think we deserve something nice and fun too, don’t you?