Tuesday, May 10, 2011

Guest Post

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.


Impera_Magna said...

Thank you for spreading the word about lupus and for posting the links to more info!

My late uncle had lupus and there are a number of auto-immune disorders in my family.

Maureen said...

Thanks, Amy. There is a lupus organization in my area that collects and sells second hand goods. I try to give them stuff when they come to my neighborhood. I've read a little about it because I have 2 other auto-immune disorders - asthma and vitiligo. I'll check out these links.

Judy said...

Thanks for the wonderful links. I was at the doctor today for my regular lupus checkup. I had no idea that today was National Lupus Day.

Barb said...

Hi Amy!
I'm sorry to hear that you have this disease.
You sound like an upbeat person and I'm sure you deal with it well.
Thanks for the info!

Kathie said...

Thanks Amy it was interesting to read and inform myself more about this disease. Keep being positive and living your life to the fullest

Lori said...

I for one, need to be more aware. I know it effects so many people. Thanks for the informative links.

ytsmom said...

Wow, I had no idea about the websites or the day,and I have lupus(30 years). Thanks for the info.