Conditions Archives

“I finally feel like there is hope for me to have a life that has purpose.” – Member Robin shares her story living with complex PTSD

Robin (survivinglife) is a PatientsLikeMe member living with complex PTSD. Recently, she shared her story with us, from her childhood to now, delving into the hardships she’s faced and how she continues to find the courage to forge through. Content within this story may be triggering for some readers. Here’s her story… I am a… Continue reading “I finally feel like there is hope for me to have a life that has purpose.” – Member Robin shares her story living with complex PTSD

Cannabis for PD treatment? Member Ian says it’s something to shout about

Member Ian (Selfbuilder) blogs and vlogs about using cannabis products to treat his Parkinson’s disease symptoms, even though marijuana (including medical marijuana) is illegal and stigmatized where he lives in the U.K. Why is he speaking up? “I know that I would not be here now if it wasn’t for the relief provided by my… Continue reading Cannabis for PD treatment? Member Ian says it’s something to shout about

We the Patients: New PatientsLikeMe poll finds a unified voice on a U.S. health care plan

Repeal? Replace? Revise? While politicians have spent months debating the details of a U.S. health care plan, a recent poll of 2,755 PatientsLikeMe members has found that patients are largely aligned about components of a strong plan for the country. “Despite the partisan divide in Congress about what should be included in a health… Continue reading We the Patients: New PatientsLikeMe poll finds a unified voice on a U.S. health care plan

“It gives me a source of hope”: Gloria’s 9+ years of tracking Parkinson’s disease and making connections on PatientsLikeMe

Member Gloria (sunshine221) has been here almost since the start. The Parkinson’s Disease (PD) community on PatientsLikeMe launched in 2007, and Gloria joined in 2008. We recently caught up with her about her early days with PD, how she has used PatientsLikeMe through the years and what she’s up to now. Early days with PD… Continue reading “It gives me a source of hope”: Gloria’s 9+ years of tracking Parkinson’s disease and making connections on PatientsLikeMe

Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions

In honor of National Women’s Health Week, Team of Advisors member Ginny (Mrslinkgetter) shares what it’s like to live with multiple health conditions – including major depressive disorder (MDD), generalized anxiety disorder and epilepsy – as well as grief following the death of her son (who also had epilepsy and major depression). On PatientsLikeMe, hundreds… Continue reading Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions

“There were so many people asking the things that I was too afraid to ask”

It’s the 10-year anniversary of the MS community, and we’re sharing a story from one of our members, Jackie (OldSalt). Jackie was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2007 and more recently, her condition transitioned to secondary progressive MS (SPMS). She found PatientsLikeMe in 2008 and believes that being part of the site over… Continue reading “There were so many people asking the things that I was too afraid to ask”

“Every morning that I wake up feeling well is a day to celebrate life.” Revisiting member Gloria’s journey

We first met member Gloria (Glow4life) in 2015 when she shared her journey on the PatientsLikeMe blog. She opened up about her experiences from receiving a lung cancer diagnosis (adenocarcinoma), to the sudden loss of her husband and going through several rounds of treatment. Despite it all she never gave up hope, and two years… Continue reading “Every morning that I wake up feeling well is a day to celebrate life.” Revisiting member Gloria’s journey

Teaming up with LupusChick to boost chronic condition awareness

PatientsLikeMe is excited to announce a new partnership with “LupusChick,” Marisa Zeppieri-Caruana. She’s an influential blogger, advocate and advisor for the lupus and chronic condition community – and an all-around cool gal. Marisa grew up with various health issues and suffered serious injuries in April 2001 when she was run over as a pedestrian by… Continue reading Teaming up with LupusChick to boost chronic condition awareness

3 energy-saving tips for people with lupus

Fatigue can be a big deal when you have lupus. About 43 percent of PatientsLikeMe members with systemic lupus erythematosus (SLE) who are tracking fatigue as a symptom say that it’s “severe.” A rough day can feel like “walking through knee-deep water,” notes one member. Here’s a roundup of energy-saving tips from a few different… Continue reading 3 energy-saving tips for people with lupus

“My experience as a patient and son helps me”: PatientsLikeMe software engineer Alex’s backstory

Meet Alex Bromley, a PatientsLikeMe software engineer who’s living with gastroesophageal reflux disease (GERD) and whose mother has fibromyalgia. He recently shared some insight on his and his mom’s conditions, his experiences as both a PatientsLikeMe employee and member and what he enjoys outside of work. What first drew you to working at PatientsLikeMe? Can… Continue reading “My experience as a patient and son helps me”: PatientsLikeMe software engineer Alex’s backstory