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
Category: Patient Experiences
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
World Lupus Day 2017: LupusChick’s 4 real answers to your questions
Today is World Lupus Day, and we’ve got a new video to share with you. Our partner LupusChick, Marisa Zappieri-Caruana, recently stopped by PatientsLikeMe and answered questions about some tips and tricks for living with lupus. Marisa sat down with Hayley Sykes, from the PatientsLikeMe Strategic Partnerships team, to answer the questions below. Patients posted… Continue reading World Lupus Day 2017: LupusChick’s 4 real answers to your questions
Meeting PF patients where they are
Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences.… Continue reading Meeting PF patients where they are
Arthritis by the numbers: 50 million+ Americans live with it
May is National Arthritis Awareness Month. How many people are living with this condition? 53 million Americans and counting. Various forms of arthritis – including osteoarthritis, rheumatoid arthritis, gout, lupus and fibromyalgia – are all on the rise, according to the CDC. Let’s look at some other facts and stats about arthritis, courtesy of the… Continue reading Arthritis by the numbers: 50 million+ Americans live with it
It’s Melanoma Awareness Month, let’s talk famous faces who’ve battled melanoma
Do you know anybody who has or had melanoma? If you answered yes, you’re among many others – melanoma is one of the most common cancers diagnosed in the United States. Rates of the skin cancer are increasing rapidly, particularly among younger people and in fact, cases of melanoma just in the last 30 years… Continue reading It’s Melanoma Awareness Month, let’s talk famous faces who’ve battled melanoma
“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