Category: Conditions

Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.

PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award

DUBLIN—December 8, 2016—A decade after their work sparked a revolution in patient empowerment and patient-centered medicine, PatientsLikeMe co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations. Inaugurated in 2000, the Humanitarian Award recognizes and encourages contributions to the fight against Amyotrophic Lateral Sclerosis/Motor Neurone Disease (ALS/MND) and is awarded to those… Continue reading PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award

Meet Jim from the PatientsLikeMe Team of Advisors

  We recently announced the 2016-2017 Team of Advisors, and now we’ll be introducing each member so you can get to know them better as they kick off their year-long term. First up is Jim (jangrilah), a member of the MS community. Jim is a new grandfather, a husband and an international executive and leadership development… Continue reading Meet Jim from the PatientsLikeMe Team of Advisors

“Hope makes us strong.” Cathy opens up for National Family Caregivers Month

Are you a caregiver or do you know someone who cares for a loved one? For National Family Caregivers Month, we caught up with Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife… Continue reading “Hope makes us strong.” Cathy opens up for National Family Caregivers Month

Lung Cancer Awareness Month: An interview with member Clare

November is Lung Cancer Awareness Month, and to share some insight into what it’s like to live with this condition, we talked to member Clare (Riverdale). When she was diagnosed with non small-cell lung cancer, her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made… Continue reading Lung Cancer Awareness Month: An interview with member Clare

In her own words: Letitia shares about her new brain for Epilepsy Awareness Month

Have you met Letitia (Letitia81) from the epilepsy community? Four years ago, her research on PatientsLikeMe led her to the brain surgery that forever changed her life — she’s now seizure-free after three decades. Things are much different now for Letitia, and she’s written all about her before and after in a recent article for… Continue reading In her own words: Letitia shares about her new brain for Epilepsy Awareness Month

PatientsLikeMe Welcomes Next Patient Team of Advisors

  CAMBRIDGE, Mass, November 14, 2016—PatientsLikeMe has named 11 members to its patients-only 2016–2017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners. “Each year, our Team of Advisors has proven… Continue reading PatientsLikeMe Welcomes Next Patient Team of Advisors

Patients at work: Member Jenny launches online craft shop on Etsy

  A few weeks ago, we kicked off a new blog series about patients who have started (or are working on launching) their own businesses. We’ll be featuring some enterprising members and learning more about how they manage their health and their career goals at the same time. Today, we’d like introduce Jenny, (jhound), a… Continue reading Patients at work: Member Jenny launches online craft shop on Etsy

“When the wind turns against you, adjust your sails” – Member Steve opens up about living with ALS

Say hello to Steve (sheronemus), a member of the ALS community who also struggles with depression. We recently caught up with him to learn about how his life has changed since his diagnosis, the importance of doing what you love and how he manages multiple conditions. Check out what he had to say about what… Continue reading “When the wind turns against you, adjust your sails” – Member Steve opens up about living with ALS

Behind the scenes of clinical trials: An interview with Dr. Ross Zafonte from Spaulding Rehabilitation Network

Have you ever been asked to take part in a clinical trial? According to a soon-to-be-published survey on PatientsLikeMe, most of our members (2 out of 3) have never even discussed taking part in a clinical trial with their physician and only about 1 in 5 have ever taken part in a clinical trial. This… Continue reading Behind the scenes of clinical trials: An interview with Dr. Ross Zafonte from Spaulding Rehabilitation Network