Hi everyone! I'm Amy, Jan's daughter. I'm writing in place of my mom today because it's May 10th -- World Lupus Day.
The entire month of May is dedicated to lupus advocacy, but today is a day the entire world bands together and tries to raise awareness about this incurable and misunderstood disease.
Chances are, most people have heard of lupus -- especially because of the TV show, House. While that's great the name is out there, not many people seem to understand much about it and how it affects people who live with it.
Unfortunately, no two cases of lupus are the same. It manifests itself differently in every person and a lot of times, they symptoms are too vague for a doctor to make a diagnosis. There are blood tests that can be done, as well as criteria the patient must fit, to determine if lupus is the cause of the problems.
I've found that one of the best ways awareness can be spread is by reading individual stories about how people were diagnosed and how it affects their life.
There are quite a few places this can be done. One is an online magazine I've written for (and intend to write for again once I have the time and energy) called
The Lupus Magazine. And because people with lupus are mostly women (90%), there's also a site called
The Fight Like a Girl Club. I've shared my own experiences about life with lupus on both of these sites.
Information can also be found at the
Lupus Foundation of America website, where you can find more than just personal stories. They offer links and resources, as well as a way to donate to help find a cure, or at least more medicines to help.
Thanks for letting me come on today to share this information, and I hope you'll check some of the pages out and learn a bit more and maybe tell others about lupus and what it really is.
I can personally tell you it isn't what most people think, and even having it and feeling I understand it fairly well, I still am thrown for a loop every now and again -- it has a mind of its own and does what it wants, when it wants. All we can ask for is more awareness in order to receive more research funding. Every new person who learns about the disease and spreads knowledge brings us one step closer to that.