Steve Saling (SmoothS), a longtime ALS member of PatientsLikeMe, has made it his mission since diagnosis to help other pALS live a better quality of life. He’s founded the ALS Residence Initiative, which has grown from the first fully-automated, vent-ready ALS Residence in Chelsea, Mass., at the Leonard Florence Center for Living, to multiple residences across the… Continue reading Steve Saling’s patient-conceived ALS project
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.
Patients as Partners: Christel on “finding your tribe”
Today, we’re sharing the final piece of the Patients as Partners series from Christel, who’s living with type 1 diabetes. Christel has relied on several of the Partnership Principles including respect, communication, and shared responsibility throughout her journey. Below, see what she says about connecting with others who know what she’s going through and discovering… Continue reading Patients as Partners: Christel on “finding your tribe”
“I really felt that we were heard” — PatientsLikeMe staff member Dan shares his experience at the FDA psoriasis conference
August is Psoriasis Awareness Month, and we’re kicking things off with a recap from the FDA’s public meeting on psoriasis back in March. The meeting was part of their Patient-Focused Drug Development Series that aims to bring the patient voice to research. Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe notes that, “The… Continue reading “I really felt that we were heard” — PatientsLikeMe staff member Dan shares his experience at the FDA psoriasis conference
Patients as Partners: Doug on learning about himself through others
Next up in our Partnership Principles series is Team of Advisors member Doug (ducksixty). A writer and former actor, Doug tapped into his creative side and has shared a personal essay about Steve, a neighbor with fibromyalgia who unknowingly helped him realize something about his own experience with depression. Check out his story below and… Continue reading Patients as Partners: Doug on learning about himself through others
Patients as Partners: Cyrena on connecting through social media
Earlier this month, Team of Advisors member Cyrena shared how she relies on many of the Partnership Principles in her interactions with her physicians. Today, she offers some insight into a different type of relationship in our health journeys — the ones we have on social media. In addition to PatientsLikeMe, Cyrena is active on… Continue reading Patients as Partners: Cyrena on connecting through social media
Treating PTS: What members said in a recent study
June is National PTSD Awareness Month, so we’re shedding some light on what it’s really like to live with post-traumatic stress (PTS). At the end of last year, we teamed up with our partners at One Mind to better understand what it’s like for PTS patients to treat their condition. Nearly 700 members of PatientsLikeMe’s… Continue reading Treating PTS: What members said in a recent study
Patients as Partners: Member Laura on launching a PF support group
Over the past few months, the Team of Advisors has been sharing how they use the Partnership Principles in their personal health journeys. Laura, who’s living with IPF, recently sat down with us to talk about the New Britain PF Support Group she launched in Connecticut, and how important it is to have a community… Continue reading Patients as Partners: Member Laura on launching a PF support group
Food for thought: Which foods trigger headaches and migraines?
Last week, we shared some study results for National Migraine and Headache Awareness Month. Today, we’re digging deeper into which foods might trigger – or help – chronic headaches. We asked the community for their diet dos and don’ts, and here’s what members have said so far… “I have found too much sugar can… Continue reading Food for thought: Which foods trigger headaches and migraines?
Patients as Partners: Allison shares her insight on teaming up with organizations
This year’s Team of Advisors has been sharing how they use the Partnership Principles in their health journeys. Today, we hear from Allison, who’s living with bipolar II. Allison is a volunteer with the National Alliance on Mental Illness (NAMI) in Dallas and also runs support groups for the Depression Bipolar Support Alliance (DBSA). See… Continue reading Patients as Partners: Allison shares her insight on teaming up with organizations
Patients as Partners: Cyrena talks empathy and assertiveness
We’ve been talking to 2015-2016 Team of Advisors about the Partnership Principles they put together and how they use them in their personal health journeys. Next up is Cyrena, who’s living with bipolar II and lupus and recently completed her PhD in pharmacology. Below, she talks about managing multiple conditions, getting on the same page… Continue reading Patients as Partners: Cyrena talks empathy and assertiveness