30 posts tagged “patient voice”

“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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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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