Many of you have already met Letitia. She’s part of the PatientsLikeMe epilepsy community, and from her Patient Voice video to Twitter (@Pulchritude81), she continues to be a rockstar when it comes to sharing her experiences and advocating for patient centered research. Her latest efforts focused on patient empowerment where she headlined a webinar with our friends at… Continue reading Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care
Tag: PatientsLikeMe
“ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS
That’s what SuperScout likes to tell people when explaining her personal motto. She was diagnosed in 2009, and in a recent interview, she explained how she takes her life one day, and sometimes one hour, at a time. In her interview, she broke down what goes on during a typical visit to her ALS clinic,… Continue reading “ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS
“I am not alone in this” – PatientsLikeMe member Rikwood55 shares his journey with lung cancer
New member (and New Zealander) Rikwood55 was diagnosed at age 58 with non-small cell lung carcinoma (stage 4), and he said he joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Rick took part in a clinical trial, and is now tolerating the immunotherapy treatment well. His scans… Continue reading “I am not alone in this” – PatientsLikeMe member Rikwood55 shares his journey with lung cancer
Myths vs. facts about multiple sclerosis
Stop! What do you know about multiple sclerosis (MS)? That’s the question we’re asking during MS Awareness Month. We’ve heard from many community members that people don’t always get what it’s like to live with MS, and that there’s wrong information out there. So as part of ongoing awareness efforts, we created shareable photos that… Continue reading Myths vs. facts about multiple sclerosis
“I am slowly building my self-esteem “ – PatientsLikeMe member SuperChick shares about her journey with PTSD
PatientsLikeMe member SuperChick is a veteran living with post traumatic stress disorder (PTSD), and her story is one of learning to cope with emotions and frustrations. She’s living proof that things can get better – she’s a loving mother of two, has a great husband and is managing several other mental health conditions. Below, she… Continue reading “I am slowly building my self-esteem “ – PatientsLikeMe member SuperChick shares about her journey with PTSD
Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results
It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire. In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth… Continue reading Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results
“You can get better” – PatientsLikeMe member jeffperry1134 shares about his journey with PTSD
Many veterans are a part of the PTSD community on PatientsLikeMe, and recently, jeffperry1134 spoke about his everyday life after returning home from military service. In his interview, he touched upon his deployment to Somalia in the early 1990s, and how his memories of Africa cause daily symptoms like anxiety, hallucinations and nightmares. But despite… Continue reading “You can get better” – PatientsLikeMe member jeffperry1134 shares about his journey with PTSD
“The human spirit is more resilient than we think” – PatientsLikeMe member mmsan66 shares her journey with ALS
PatientsLikeMe member mmsan66 was diagnosed with ALS back in 2008, but she’s been fortunate to experience an unusually slow progression, which currently affects only her legs. As a college professor, financial planner and ALS advocate, she raises awareness through her work with the Massachusetts Chapter of the ALS Association. She even finds time to visit… Continue reading “The human spirit is more resilient than we think” – PatientsLikeMe member mmsan66 shares her journey with ALS
“I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP
Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but… Continue reading “I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP
“In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer
Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey below. The journey… Continue reading “In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer