“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
Category: Patient Experiences
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
“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development
Member Lisa (lcs), a Team of Advisors alum who’s living with Parkinson’s disease, has found her advocacy niche: involving patients in drug development. Diagnosed with PD in 2008, Lisa served as a patient thought leader and co-author of a published journal article called “Increasing Patient Involvement in Drug Development.” She worked on the publication along… Continue reading “My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development
Could the Rolling Stones be part of Parkinson’s disease management? (Check out Pamela Quinn’s blog)
It’s Parkinson’s Awareness Month, and we’re continuing to find meaningful stories in the world of PD. Did you tune into our recent podcast featuring Pamela Quinn – a professional dancer who’s living with Parkinson’s? She teaches dance classes in New York City for people with PD. Now, she’s taking her dance and movement tips to… Continue reading Could the Rolling Stones be part of Parkinson’s disease management? (Check out Pamela Quinn’s blog)
Talking medication and sleep for National Sleep Awareness Week
Did you know this week is National Sleep Awareness Week? Sleep disorders affect around 50-70 million US adults, and troubled sleep is common within the patient community – just take a look at the results from a patient poll we did with you in 2015. There are many reasons someone might be struggling with a… Continue reading Talking medication and sleep for National Sleep Awareness Week