18 posts tagged “TOA”

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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“We are all connected”: Check out this new video starring the 2018 Team of Advisors

Posted January 23rd, 2018 by

Have you had a chance to meet the 13 members selected to join the 2018 Team of Advisors? Get a glimpse of the dynamic group in this new 2-minute video, and keep an eye on the PatientsLikeMe newsfeed and Facebook page for their individual videos and stories.

This group will be collaborating with us in the next year to offer feedback on new research and product development, to advocate on behalf of patients, and provide real-world perspectives to PatientsLikeMe and our partners.

Say hello to the team! From left to right in the screenshot above:

(Back row)

Marcia Holman (@marcia_holman), living with multiple myeloma and breast cancer

Rich Pollock (@rcpollock), living with ALS

Rosie Stambaugh (@ClairHart), living with major depressive disorder and fibromyalgia

LaKeisha Parnell (@Hope4ull2), living with epilepsy

Susan Tomasic (@SusanT318), living with rheumatoid arthritis

Kip Edwards (@Kip_Edwards), living with multiple sclerosis

Paul Tavano (@PaulT), living with ALS

Elizabeth Asdorian, (@e_sf) living with multiple sclerosis

Bernadette Mroz (@yellsea), living with Parkinson’s disease

Alysia Taylor (@stormyND), living with bipolar disorder

(Front row)

Christine Von Raesfeld (@Cvonraesfeld), living with lupus

Jeanette Alston-Watkins (@JeanetteA6872), living with lupus

Melinda Lowery (@MelindaAnn), living with rheumatoid arthritis

This group is available as a resource to the rest of the PatientsLikeMe community and you’ll be hearing more from them throughout the year. Join PatientsLikeMe today to connect with them and 600,000+ other members!

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