3 posts tagged “Research study”

Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”

Posted March 14th, 2018 by

Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.”

I’ve always been a sucker for a focus group. Give me some free pizza and I’ll tell you everything you want to know about your product, service or ad campaign. In fact, I got into advertising as a career because I liked the research part of it so much.

So, when I was diagnosed with multiple sclerosis, I applied that same mindset to my disease approach.

The first MS research study I did came a few months after my doctor prescribed Avonex. For someone with a virulent needle phobia, a weekly intramuscular shot sounded almost worse than having MS. So I spent the next few months imagining myself on a beach—right before I tried in vain to push an inch-and-a-half needle into my leg. The meditation didn’t quite take, but my passion for research didn’t waiver (thank goodness for a husband who didn’t mind giving shots and, later, the Avonex quick inject pen!)

Next came the EPIC Study — “an intensive observational study of over 500 people with MS who have been carefully studied since 2004.” I even got my parents involved as a control group. Once a year for twelve years I’ve been getting evoked potentials, an eye screening, a hand-eye coordination exam, and a bonus MRI — I also play a dreaded number addition memory game. I’m proud to be part of this study—last week I was lucky enough to see some of the preliminary findings that I contributed to (hint: there is some AMAZING stuff happening in the MS therapy world.)

I made a brief, but unsuccessful, journey into a Copaxone clinical trial where I had the honor of getting lipoatrophy faster than any patient my doc has ever seen. My case even made it into a medical journal. And while the dents in my thighs never let me forget this one, I like to think my experience helped someone else avoid their own unseemly dents.

My research obsession doesn’t stop with MS. I fit a patient profile for a breast screening study to determine if mammograms alone or with a DNA test can improve outcomes for detecting early cancers. I was happy to be a part of this work, plus I learned I don’t have a carrier gene—a nice bonus of helping out.

Yes, health studies are a bit addictive to me. I get a thrill from trying a new approach or having my data contribute to a new protocol. And while there are different levels of research (especially when it comes to drug trials), every observation, every data point moves our collective understanding about MS and chronic illness forward. I’m grateful to play a role in that; it’s powerful to use a devastating diagnosis for good.

So, what’s next? The other day I heard about an MS gut microbiome study. The details are…a little gross. But sign me up!

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Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences

Posted December 18th, 2017 by

Lupus flares are hard to define. In fact, there wasn’t a clear clinical definition of flares until 2010 (and even that definition is pretty broad).

If you’re living with lupus, how would you define a flare? What do you experience during one? To gain a deeper understanding of flares from the patient perspective, the PatientsLikeMe research team partnered with Takeda Pharmaceuticals to study our online community’s discussions and data related to flares. Check out these graphics that show some of the key findings about flares among patients with systemic lupus erythematosus (SLE), the most common form of lupus.

A mix of symptoms

Below are the five symptoms researchers spotted most frequently in SLE forum posts about flares. Other flare symptoms mentioned in the forum include: nausea, fever/flu, lupus fog, hair loss, migraine, back pain, blood pressure, bloody nose, insomnia, mental health effects, panic, rib pain, skin sensitivity, swollen glands, weakness, weight gain, lower GI, face tumor, hives, infection, vasculitis, and voice effects.

“I was really flaring…”

PatientsLikeMe researchers say that a flare is “a cluster of symptoms which usually includes pain and fatigue, at a minimum.” But the specifics may vary: Everyone describes their flares — and their duration — differently. Here are just a couple of the forum posts researchers highlighted.

Living with more than lupus

“…and then I had a flare of lupus, RA and Sjogren’s that still has not gone away,” one member wrote in the forum. Many members who’ve discussed their flares have also shared which other conditions they’ve been diagnosed with in addition to lupus.

If you’re living with lupus, how would you describe what happens during your flares? How long do they tend to last? Do you have other conditions that make your flares worse or hard to identify? Share your experiences here, or — even better — join PatientsLikeMe to learn from and connect with nearly 30,000 people living with lupus.

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