It Starts in the Lab: Why Everyone Wins When You Support Lupus Research

DSC_0768By Carie Sherman

Hooray, hooray, the first of May! Okay, I’m a little late there. But it’s for good reason: Lupus Colorado has updated their website. It looks awesome. Nice work, Team LC!

But, again, hooray! Because it’s May, which means it’s Lupus Awareness Month.

Beautiful month. Terrible disease.

Twenty years ago, while I was putting the finishing touches on my college entrance essays, lupus patients everywhere were receiving grim news: 40 percent of people diagnosed with lupus were NOT expected to live more than 3 years.

Today, more lupus patients than ever can expect to live a normal life span. Yet these facts remain:

There is no cure.

  • More than 1.5 million Americans have it.
  • Even “mild” cases can be debilitating and if not monitored appropriately, life-threatening.
  • Prior to the FDA-approval of Benlysta in 2011, it had been 50 years (!!!) since a new lupus therapy had been introduced.
  • More than 90 percent of people with lupus are women.
  • Women of color are 2-3 times more at risk for lupus than Caucasians.
  • Lupus research is underfunded and poorly understood, despite the disease’s prevalence.

So what can be done about this disease which has no known cause, few medicines, and no cure?

To me, that answer is simple: Support lupus research.

Supporting lupus research is a win for everyone. Why?

  • The incidence of autoimmune disease is rising. The National Institutes of Health estimate, “up to 23.5 million Americans have an autoimmune disorder,” (cancer affects up to 9 million; heart disease = 22 million).
  • An increased understanding of immune system activity can benefit us beyond lupus — people who receive transplants, AIDS patients, cancer patients, and patients of infectious disease are also likely to benefit from increase knowledge.

Help LC Support the Lupus Research Institute (LRI) Harness the “Power of 10” CampaignPower-of-10-Image140

Advance lupus research by getting informed and getting involved. According to the LRI, lupus is considered to be the scientific prototype for autoimmune research because the immune system can attack any part of the body. When scientists unlock lupus, the door may open for some 100 other autoimmune diseases affecting millions of people.

  • Lupus patients, consider joining a clinical trial. Every medication we currently take was approved because of volunteers.
  • Spread awareness. Email 10 friends or post info on your social media platform of choice. I changed my profile pics–did you?
  • Donate. Gifts of any size can make a large impact. I just sent a text that said LUPUS to 50555 to make a $10 donation to the Lupus Research Institute (92 cents of every dollar goes directly to research).

Before my doctor handed me that slip of paper saying “systemic lupus erythematosus,” I knew nothing about lupus. The last few years have been eye-opening to me in terms of the number of people who suffer (often in silence), the misunderstanding of autoimmune disease, the lack of tolerance we as a society have for chronic illness, and the lack of understanding we have about systemic disease. We have a lot to learn. Any donation helps.



Three Things You Can Do TODAY to Make a Difference for People with Lupus

And each takes only a few minutes (and are mostly self-serving). I promise. 

Carie Sherman1) Go shopping! I’ll be putting my Amazon Prime account to good use this week by specifying Lupus Colorado (under its incorporation name of Lupus Foundation of Colorado) as the beneficiary. In addition to the regular portion of donations, Lupus Colorado will receive an extra $5 for each donation. Learn more.

2) Make room for your Amazon purchases (and have someone ELSE pick up the stuff!). Lupus Colorado depends on your support to help the individuals and families impacted by this lupus. Meet spring with a cleaner house and a do-gooder spirit by donating your unwanted clothes, goods, and household items by calling 303-231-9337. Learn more.

3) Become an armchair advocate. While you’re waiting for your lives on Candy Crush to reset (I’m looking at you, dear husband!), visit http://www.congressweb.com/lri. There you’ll find info on increasing access to medications that already exist and increasing funding for important research. Our executive director is in Washington, D.C., now. Let’s show her that we’ve got her back.

These are just a few simple ideas to get you into support mode. As always, thanks for supporting me and all the people who benefit from the amazing work of Lupus Colorado.

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Reality check quiz: 5 questions to honestly assess your sleep

Carie ShermanBy Carie Sherman

Lupus presents differently in every person, but one symptom seems to be part of every Lupie’s nightmares: Fatigue.

I met with my rheumy yesterday and said—as usual: ”I’m tired.” To which he replied sympathetically: “I know.”

But then he did the unthinkable: He suggested a reality check.

He said I might never fully understand the whys and whats of the fatigue that seems inherent with autoimmune disorders, even when they’re not actively flaring. Also, my own physical factors (sleep apnea, GERD, arthritis) can all contribute to poor sleep.

Dr. M suggested I think about that which I can control. In essence, how my sleep habits impact the quality of rest I receive.

So I did some research. And according to the sleep disorder clinic at the University of Maryland Medical Center, there just might be a few things I could improve upon.
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