Conditions Archives

“The most important thing is to know you are not alone” — Member Vicki opens up about her TBI

Vicki (Vickikayb) is an avid gardener, volunteers at a wildlife rehabilitation center and loves to cheer on the Kentucky Wildcats. She’s also been living with a traumatic brain injury (TBI) since 2004. In a recent interview, Vicki shared how she lives a full life in spite of her condition and how it’s inspired a new… Continue reading “The most important thing is to know you are not alone” — Member Vicki opens up about her TBI

“I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month

September is Ovarian Cancer Awareness Month, so we caught up with member Iris (Imartinez) to find out what living with this condition is really like. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having… Continue reading “I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month

The community speaks out for Pulmonary Fibrosis Awareness Month

How much do you know about pulmonary fibrosis? Today kicks off Global PF Awareness Month, and to spread more understanding for this condition which affects over 6,600 PatientsLikeMe members, we asked the community to speak up. In a recent forum thread, members chimed in with the one thing they think people should know about what it’s… Continue reading The community speaks out for Pulmonary Fibrosis Awareness Month

Paul Wicks weighs in on a new, patient-conceived project

Partnering with patients is at the very core of what we do, but a new collaboration with longtime ALS member Steve Saling (SmoothS) is giving that a new spin — it was Steve’s idea and he’s been driving the project from day one. Since his diagnosis in 2006, Steve has made it his mission to… Continue reading Paul Wicks weighs in on a new, patient-conceived project

Steve Saling’s patient-conceived ALS project

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

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