Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors and is living with autonomic neuropathy, a rare disease which forced an end to her career as a Registered Nurse. In part 1 of her insurance series, she tells the story of how eight of her doctors became out-of-network overnight, and how she navigated… Continue reading Team of Advisors member Kimberly shares part two of her insurance series
Tag: 2016-2017 Team of Advisors
5 tips for practicing self-care when your chronic illness is trying to take over
As a woman with bipolar disorder I and PTSD, I can pretty safely say that no two days are the same. There are days when the world is sunshine and roses; life is grand! Then there are days when the inside of my brain is trying to run the show without me, and it’s leaving… Continue reading 5 tips for practicing self-care when your chronic illness is trying to take over
Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one
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… Continue reading Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one
Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions
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… Continue reading Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions
The record on research: Catching up with TOA member Cris
Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials… Continue reading The record on research: Catching up with TOA member Cris
Communicating drug risks/benefits so the message really gets through
Last month, Jim, a member of the PatientsLikeMe Team of Advisors, was invited by Sally Okun, PatientsLikeMe’s VP Advocacy, Policy & Patient Safety, to present at the Drug Information Association (DIA) Pharmacovigilance Conference. He also led a lunch roundtable for drug risk/benefit communications experts. Sally, who also participated on the roundtable panel, says requests for… Continue reading Communicating drug risks/benefits so the message really gets through
Meet Lindsay from the PatientsLikeMe Team of Advisors
Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others. Keep reading to get to know her story and how she tackles… Continue reading Meet Lindsay from the PatientsLikeMe Team of Advisors
Meet Hetlena from the PatientsLikeMe Team of Advisors
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… Continue reading Meet Hetlena from the PatientsLikeMe Team of Advisors
Meet Ginny from the PatientsLikeMe Team of Advisors
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… Continue reading Meet Ginny from the PatientsLikeMe Team of Advisors
Meet Cris from the PatientsLikeMe Team of Advisors
Say hello to Cris (@Criss02), another member of the 2016-2017 Team of Advisors. Cris is a proud grandparent and a vocal advocate for the ALS community. She sat down with us and opened up about what it’s really like to live with her condition. Cris recently presented at the ALS Advocacy conference in Washington D.C.,… Continue reading Meet Cris from the PatientsLikeMe Team of Advisors