It’s World MS Day and this year we checked in with the global MS community to see how members around the world are living with MS. Here’s what they had to say: “MS is very rare in India. I’m from North India, known as Kashmir, a very beautiful place and it’s rightly known as… Continue reading Going global for World MS Day
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“Always know that you are not alone.” Member Debbie shares about life with PTSD
As a “happily married mom of three and grandmother to four,” Debbie works each day to remain active and positive, filling her time with the things she loves, like crocheting, baking and helping others to see there is a light at the end of the tunnel. “I try very hard each day to stay… Continue reading “Always know that you are not alone.” Member Debbie shares about life with PTSD
“Our countries have come together, but our people have not”: PatientsLikeMe’s Margot shares her story
Margot Carlson Delogne is the Vice President of Communications at PatientsLikeMe. She is also the child of an American soldier lost at war. This Memorial Day we wanted to show how she’s working on her own healing process, but also repairing some of the divide left in the aftermath of the Vietnam War. In December… Continue reading “Our countries have come together, but our people have not”: PatientsLikeMe’s Margot shares her story
“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
It’s Clinical Trials Day, and patients are driving change
Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed. Bringing the patient voice to clinical trials has long been part… Continue reading It’s Clinical Trials Day, and patients are driving change
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
How does ALS make you feel #InThreeWords?
May is ALS awareness month and this year, we’re joining the ALS Therapy Development Institute to share how ALS makes us feel, #InThreeWords. Sad, determined, frustrating as hell – just a few of the words PatientsLikeMe staff chose. Want to get involved? Check out what PatientsLikeMe staff had to say, including a video from our… Continue reading How does ALS make you feel #InThreeWords?
“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”
Let’s make fibromyalgia visible today
“I get so angry when friends come over to visit, after I haven’t been able to get out of the house for a month, and tell me how good I look. Or the idiots who ask you how you got the handicapped parking tag when you look so healthy. People just don’t see how difficult… Continue reading Let’s make fibromyalgia visible today
What’s in my bag? Motherhood with a health condition = “Mary Poppins” purse
Happy (almost) Mother’s Day! I’m Erin, a PatientsLikeMe senior copywriter living with type 1 diabetes – and a very busy toddler. My sister recently joked that my purse is “quite the Mary Poppins bag.” And it is. Between my diabetes “jazz” and baby paraphernalia, I need a big bag. The spread of stuff I lug… Continue reading What’s in my bag? Motherhood with a health condition = “Mary Poppins” purse