Help solve the Cruel Mystery

I know I’ve said raising awareness is the purpose of this blog, why I walk, why I share my story. But let’s be honest to further lupus research and lupus treatments we need money.

There are plenty of ways to donate:

My walk page is still open until the end of May

Make a general donation to the Lupus Foundation of America

Funds donated to the Lupus Foundation of America go to medical research, patient support programs, community education, and advocacy for public policies. The LFA has been instrumental in providing support services for me. I don’t know how I managed this disease for so long without the help of my local chapter.

Make a donation to the Alliance for Lupus Research

100% of the donations to the ALR fund lupus research. Since 1999 the ALR has given $81 million to 159 research programs. One of their funded programs (the study of B-cells) helped pave the way for Benlysta, the first lupus drug in a century.

Purchase one of these awesome shirts and $8 of every sale goes to the ALR.

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No donation is too small. Even the change between the couch cushions helps. Thank you to those of you who have donated, and thank you in advance to those who intend to donate.

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A new way to think about lupus

Last weekend I attended the Lupus Foundation’s Lupus 101 seminar at Piedmont Hospital in Atlanta. While I’ve had lupus for 10 years and am well versed in the ins and outs of the disease, I wanted to take Sean to further his understanding and thought it wouldn’t hurt to hear another doctor’s perspective. Rheumatologist Dr. Gary Myerson was the speaker and he was brilliant!

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Dr. Myerson explained lupus as follows: Your immune system is a big game of cowboys and indians. The cowboys are protecting the fort (your organs) and instead of attacking the indians (foreign invaders/viruses/bacteria) the cowboys get confused and attack each other.¬†How simple is that?!?! I think for people who don’t understand the disease it is a wonderful analogy.

After a battle (flare) there’s a big messy battle field; dead cowboys, dead indians, dead horses, a burning fort. You know the scene from the movies.

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But what no one ever tells you is who cleans up the mess. In your body, it’s the compliments or C3 and C4 as us lupus patients know them by. If your C3 and C4 levels are low that means there are too many battles, too many attacks and your body can’t clean up the mess fast enough. C3 and C4 are the measure of your disease activity.

I have always known what lupus is, what the symptoms are, what to look for in my blood work. I always knew what, but I never knew why. Dr. Myerson told me why. Thank you so much to the ladies at the Georgia Chapter of the Lupus Foundation for seminars like this one. They are so incredibly valuable.

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