Please reassure me: Is anyone searching for a lupus cure?

I’m holding two bags of medicine recently prescribed to tackle a new condition that has caused me neurological damage. It’s another unprovoked manifestation of systemic lupus erythematosus.

It took weeks to secure them because the prescribing rheumatologist was required by some invisible judge named “insurance” to justify the dosage and frequency as “medically necessary.”

Standing here holding more medication, scanning the details of all the side effects, and mentally adjusting my dosage schedule to include five more pills a day, I can’t help but question the veracity of it all. What will these medicines, combined with all of the other lupus treatments, benefit? Will they pull me through until there’s a cure, or will they push me in the other direction, thanks to multiple side effects? Are people even working on a cure?

Yes, I assure myself, at least they say they are. But who has actually said so? Who has said, “We are working on a cure for lupus”?

Recommended Reading

January 10, 2024 by Candace J. Semien

Why learning to say no is part of self-advocacy in healthcare

This inner dialogue is heightened whenever a flare stirs. It resonates whenever the combination of lupus and Sjögren’s syndrome causes a new condition, which means yet another diagnosis and a matching collection of brand-new pills.

This diatribe usually turns into a full-blown inner argument between what I know for sure and what I want to believe. I know there are associations, organizations, research groups, and universities doing the work to understand lupus, how people live with and survive lupus, how cells respond to pharmaceutical treatments, new disease patterns, etc., etc. Yet I’m listening to myself and waiting to hear about anyone who has actually said, “We are working on a cure!”

On closer inspection

I’m stumped by my own questions. But then I read an article by NBC News in which scientists say they’ve identified a root cause of lupus that could lead to new treatments. Another story, by USA Today, reports on the same study, which looked at 19 lupus patients. Commenting on the study, co-author Jaehyuk Choi, an associate professor of dermatology at Northwestern University’s Feinberg School of Medicine in Chicago, said, “By identifying a cause for this disease, we have found a potential cure that will not have the side effects of current therapies.”

So there. Yes, Candace, people are doing the work to find a cure, and that soothes my doubts. Having the names of researchers, their funders, and laboratories and knowing the process (to some degree) reassures me that the end goal is a cure, full stop. Temporary treatments to mitigate symptoms may come along the way, but the research, I remind myself, is to cure lupus.

I find comfort in the boastings of the Lupus Research Alliance, which claim to have a “revolutionary approach” to “free the world of lupus by turning its very complexity to its cure.” A CURE!

I’ve advocated alongside groups like this, met with congressional leaders to seek funding for research, participated in awareness walks, and given presentations to encourage people to participate in clinical trials. Therefore, allow me to submit this courageous call to the scientific community: Please include those of us who have lupus in the process to discover and announce a potential cure.

Not only do we want to provide our voice to the cause and advocate for funding, but we also want to actively participate in the discovery process, beyond clinical trials.

Let us contribute to data analysis. Every time we get our bloodwork back, for example, we scrutinize the results with acuity, looking for patterns and indications of disease activity that isn’t noted in phlebotomy reports. We note how exercise, a temporary change in diet, a modification of the time of day when medicines were taken, or other factors may have affected the results.

We’ve discussed at length the precursors in our lives that may have led to disease, such as confirmed viral infections or exposure to environmental factors. Many of us — certainly more than 19 — can tell you what it all means, beyond the tests. Let us share your findings with clarity and conviction. Engage us in linking the research labs to the doctors’ offices so that these discoveries can become curative treatments and not another handful of little white pills.

Is that too much to ask?

Until then, let’s monitor disease triggers, temper symptoms, and work whenever and as much as possible. Let’s celebrate our bodies’ rhythms, even while staring at new medicines and wishing they could cure lupus.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.