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“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care

1 Comment / Conditions, Parkinson's Disease / By

PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician. Out with the […]

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Zoodles! Let’s dish on lupus/food + swap recipes

1 Comment / Conditions, Lupus / By

If you’re living with lupus, have you found any particular foods that affect you and your condition — for better or worse? Member Jeanette (JeanetteA6872), a member of the 2018 Team of Advisors who’s living with systemic lupus erythematosus (SLE), shares which ingredients she tries to include or avoid in her diet, plus three of her favorite

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

Conditions, Multiple Sclerosis, Patient Experiences, Research / 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

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

Conditions / 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

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PatientsLikeMe names 2018 Team of Advisors

4 Comments / Patient Experiences / By

  CAMBRIDGE, Mass., December 14, 2017—PatientsLikeMe has named 13 members to its 2018 Team of Advisors, a patients-only group that collaborates with the company on new research and product development, advocates on behalf of patients, and provides real-world perspectives to industry and PatientsLikeMe partners. “This is now our fourth Team of Advisors, and its members

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Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one

6 Comments / Conditions, Patient Experiences, Rare Diseases / By

  Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors. She’s living with autonomic neuropathy, a rare disease that  prematurely ended her career as a registered nurse. In her time as an RN, she was often charged with navigating the ins and outs of insurance companies on behalf of her patients, something she

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Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions

1 Comment / Conditions, Depression, Epilepsy, Patient Experiences / By

In honor of National Women’s Health Week, Team of Advisors member Ginny (Mrslinkgetter) shares what it’s like to live with multiple health conditions – including major depressive disorder (MDD), generalized anxiety disorder and epilepsy – as well as grief following the death of her son (who also had epilepsy and major depression). On PatientsLikeMe, hundreds

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Meet Hetlena from the PatientsLikeMe Team of Advisors

2 Comments / Conditions, Lupus, Patient Experiences / By

Say hello to Hetlena (@TheLupusLiar) from the 2016-2017 Team of Advisors. We recently caught up with Hetlena and she chatted with us about some of the challenges she faces living with lupus and why she won’t let it stop her: “Putting off your aspirations, dreams, and wants due to the fear of what an illness

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Meet Ginny from the PatientsLikeMe Team of Advisors

1 Comment / Conditions, Depression, Epilepsy, Patient Experiences / By

Say hello to Ginny (Mrslinkgetter), a case manager and family partner with Youth Mobile Crisis Intervention living with depression and epilepsy.  She’s also a member of the 2016-2017 Team of Advisors. Check out what Ginny had to say about living with depression and epilepsy, the loss of her son, and how being her own advocate

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