PatientsLikeMe members are located all over the world, and this month, Swedish MS advocate Jazz1982 shared about what life is like on the other side of the Atlantic. She spoke in detail about the stigma surrounding MS, her exceptionally strong mindset and her experiences with Betaseron, Tysabri, Mabthera (Rituximab) and a few other pharmacological treatments. […]
March is Multiple Myeloma Awareness Month, and to keep the awareness going strong, we’re sharing our recent interview with PatientsLikeMe myeloma community member Bob, also known as AbeSapien. The happily-married, long-time data processing expert spoke about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding.
Several people in the PatientsLikeMe community use the phrase “new normal” after being diagnosed with pulmonary fibrosis (PF), and PF member John_R doesn’t’ think his new normal is all bad. This month, he chatted with us about getting diagnosed with PF, bringing oxygen to the workplace, and how living with his Sweetie keeps him focused
Multiple Sclerosis Awareness Month is fast approaching in March, but we just couldn’t wait until then to share our recent interview with patient advocate and PatientsLikeMe member Starla Espinoza, also known as baebae. On top of being a PatientsLikeMe member since 2007, tracking her health and sharing experiences with the community, she’s also a blogger and
We wanted to take a quick look back and share how the PatientsLikeMe community has continued to change healthcare for good over the last year. Thousands of members added their voices to real-time research, all while providing support to one another and sharing about their personal health experiences. It really is a group effort, so
As 2013 winds down… Part I Read More »
At PatientsLikeMe, we believe that the patient voice is what can change healthcare for good, so we’re always excited when our members take the time to talk about their personal stories with the community. This week, Geof, a PatientsLikeMe multiple sclerosis (MS) community member with a big heart and an even bigger family, shared his
A life well lived: Giving and sharing with PatientsLikeMe member Geof Read More »
Some of you probably remember seeing her on the PatientsLikeMe blog before. Lori is living with idiopathic pulmonary fibrosis, and when we first chatted with her last July, she shared her experiences with blogging, the difficulty in finding the right diagnosis and how connecting with others has positively impacted her life. For our “Are You
As part of our “Are You Sleeping?” initiative, we’re talking with different patients to learn what it’s like to live with a lack of sleep and how that impacts their health. Recently, we caught up with Marcia, a PatientsLikeMe MS community member (some of you might know her as gamma) and happy grandmother of 3
Do you know what alkaptonuria (AKU) is? If you don’t, you’re not alone. AKU is a rare but devastating condition that causes severe, early onset osteoarthritis. It also causes cardiovascular problems, such as heart disease, kidney, bladder and prostate stones and other serious health complications. AKU is so rare that it’s estimated to only affect
Have you met PatientsLikeMe member Jeff, also known as NinerFan? He has been living with interstitial lung disease (ILD) since 2004 and he recently took some time to share his journey with us. He spoke about everything from getting diagnosed to being a newlywed, and gave a great list of advice for others going through a
