diagnosis

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

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

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Working with a condition: Your rights and options for sharing with your employer and taking leave

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

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Teaming up with LupusChick to boost chronic condition awareness

PatientsLikeMe is excited to announce a new partnership with “LupusChick,” Marisa Zeppieri-Caruana. She’s an influential blogger, advocate and advisor for the lupus and chronic condition community – and an all-around cool gal. Marisa grew up with various health issues and suffered serious injuries in April 2001 when she was run over as a pedestrian by

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Checking in with member Bev – “Laughter and comedy are still a huge part of my health management.”

Remember Bev (YumaBev), who we met back in 2012, after she’d just had deep brain stimulation (DBS) surgery? She told us about her blog Parkinson’s Humor and a book of stories from her blog, Parkinson’s Humor: Funny Stories about My Life with Parkinson’s. Well we recently caught up with her again to see how things

Checking in with member Bev – “Laughter and comedy are still a huge part of my health management.” Read More »

“I have been empowered to face the challenges of my condition” – Member Deb shares her journey with type 2 diabetes

Meet Deb (optimisticrealist), a self-described optimist who found no challenge too daunting, exercised daily and maintained a healthy diet. We recently caught up with her and she told us how her type 2 diabetes diagnosis changed the way she thought about what it meant to be healthy. Learn more about Deb’s story and what she

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“Listen to yourself.” Member Daniela opens up about life with MS and psoriasis

Daniela (DanielaO) is living with multiple sclerosis and psoriasis  in Puglia, Italy, and loves crafts, art history, music and traveling. She recently opened up to us about getting her first diagnosis at age 14, managing multiple conditions, and how connecting with others on PatientsLikeMe makes her feel “present and part of a whole.” Here’s what

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Patients as partners: Member Peggy on the diagnosis journey (Part 2)

Earlier this week, member Peggy (peggyznd) illustrated the 2015-2016 Team of Advisors’ Partnership Principles by sharing how to advocate for yourself and work with your doctor in your diagnosis journey. Here, she talks about finding a specialist, questioning your diagnosis and switching doctors. Peggy reminds all patients play an active role in their health: “Be like the

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Patients as Partners: Member Peggy on the diagnosis journey (Part I)

Last week, Team of Advisors member Jeff kicked off a series of conversations about the Partnership Principles with his thoughts on partnering better with your care team. Today, Peggy (peggyznd) digs deeper into one area where strong relationships are key: getting diagnosed.  Peggy draws from her own experience with kidney cancer and breast cancer to

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“I am working on all of it slowly” — Member David opens up about his experience with PTS

Meet member David (david61060), a United States Air Force veteran who’s living with multiple conditions including PTS, sleep apnea, and epilepsy. When we caught up with him, David shared what it was like to grow up as a “navy brat,” his experience in the military, and how It took him more than nine years to

“I am working on all of it slowly” — Member David opens up about his experience with PTS Read More »

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