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
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.
“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
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”
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 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
Patients as Partners: John and David share their clinical trial experiences
We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. Recently, we sat down with John (Dockstoy), living with ALS, and David (Davidgewirtz), who’s living with lung cancer. John and David are both interested in research and have been involved in a few clinical trials. Below,… Continue reading Patients as Partners: John and David share their clinical trial experiences
Patients as Partners: An open letter from Craig to the “normals”
We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes,… Continue reading Patients as Partners: An open letter from Craig to the “normals”
Patients as Partners: Gus and Maria talk partnering with your caregiver
The 2015-2016 Team of Advisors recently introduced the Partnership Principles. They’ve been sharing personal stories about these principles in action to kick-off conversations on partnering with all sorts of people — medical students, clinical trial coordinators, and “normals.” Today, Team of Advisors member Gus along with his wife and caregiver, Maria, share about their special relationship and how… Continue reading Patients as Partners: Gus and Maria talk partnering with your caregiver
Patients as partners: Member Peggy on the diagnosis journey (Part 2)
Earlier this week, member Peggy (peggyznd) illustrated the 2015-2016 Team of Advisors’ Partnership Principles by sharing how to advocate for yourself and work with your doctor in your diagnosis journey. Here, she talks about finding a specialist, questioning your diagnosis and switching doctors. Peggy reminds all patients play an active role in their health: “Be like the… Continue reading Patients as partners: Member Peggy on the diagnosis journey (Part 2)
Patients as Partners: Member Peggy on the diagnosis journey (Part I)
Last week, Team of Advisors member Jeff kicked off a series of conversations about the Partnership Principles with his thoughts on partnering better with your care team. Today, Peggy (peggyznd) digs deeper into one area where strong relationships are key: getting diagnosed. Peggy draws from her own experience with kidney cancer and breast cancer to… Continue reading Patients as Partners: Member Peggy on the diagnosis journey (Part I)