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
Multiple myeloma community members form “forever friends” by taking it offline
What started as a simple chat between friends in the forum evolved into something much bigger. Members from the multiple myeloma community on PatientsLikeMe decided to take their friendship out of the forums and into real life. Marcia (marcia_holman), Dennis (DennisIvan), Paul (paulatsea) and Lee (Dapylil), along with spouses and grandchildren, got together and discussed… Continue reading Multiple myeloma community members form “forever friends” by taking it offline
“I thank my donor every day for this gift”: Member Laura shares her lung transplant story
Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us. How are you feeling these days? I am feeling great. I’ve had a couple bumps in the road… Continue reading “I thank my donor every day for this gift”: Member Laura shares her lung transplant story
Going the distance for MS awareness
Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to… Continue reading Going the distance for MS awareness
“I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story
“Aletha Meyer Pinnow, 31 … died from depression and suicide on Feb. 20, 2016.” So begins the obituary that Eleni Pinnow penned about her sister for the Duluth (Minn.) News Tribune. The candid obit went viral and struck a chord with countless readers – in the mental health community and beyond – so Eleni followed… Continue reading “I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story