18 posts tagged “diagnosis”

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

Posted 7 months ago 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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Working with a condition: Your rights and options for sharing with your employer and taking leave

Posted July 28th, 2017 by

Have you ever struggled with managing your health condition(s) while holding down a job? Or worried about missing too much work because of your unpredictable symptoms?

Team of Advisors member Hetlena (TheLupusLiar) is living with lupus and is very interested in the topic of balancing work with a chronic health condition. She helped us develop these infographics, which apply to people with any medical condition.

Sharing about your diagnosis at work

Do you need to tell your employer? What can and can’t they ask you about your health? What role should your human resources department play? Find out in this infographic.

(If you want to go deeper into these topics, here’s a good resource with answers to more questions like this.)

Work leave rights, at a glance

This infographic helps explain work leave under the Family and Medical Leave Act (FMLA) and the American Disabilities Act (ADA) – and how they can cover you when going to work isn’t possible because of your condition.

If you’re looking for more than an intro to the FLMA and ADA, you can find the full details here.

On PatientsLikeMe

More than 51,000 members have listed “working with my condition” as an interest on their profile, and there are hundreds of discussions about work and jobs in the forums.

Have any experience with (or questions about) work leave or working with your condition? Comment here or join the community to take part in the conversation.

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