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… Continue reading “MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza
Living with hope – An interview on AKU with Alycia and Nate
We’ve had the pleasure of talking with and featuring many PatientsLikeMe members on the blog over the years, but Nate is the youngest by far. He’s just 5 years old and is living with Alkaptonuria (AKU), a rare metabolic disease, sometimes called Black Bone Disease. Recently, we had the chance to chat with his mom,… Continue reading Living with hope – An interview on AKU with Alycia and Nate
A life well lived: Giving and sharing with PatientsLikeMe member Geof
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… Continue reading A life well lived: Giving and sharing with PatientsLikeMe member Geof
Can patients become innovators? Rishi Bhalerao from PatientsLikeMe speaks at TEDx Springfield 2013
Rishi Bhalerao, our Program Director of Client Services, recently spoke about patient innovation at the 2013 TEDx conference in Springfield, MA. Rishi talked about how the path to innovation begins right with patients because they are the ones who live with a condition day-in and day-out. Their sharing helps bridge the gap from patient to… Continue reading Can patients become innovators? Rishi Bhalerao from PatientsLikeMe speaks at TEDx Springfield 2013
“Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week
Ok, we’re going to switch things up a little bit. This week (Dec. 1st-7th) is National Crohn’s Disease and Colitis Awareness Week, and besides sharing about ways you can help, we thought we’d get personal and tell Maria Lowe’s story. Maria actually works at PatientsLikeMe as part of our Health Data Integrity and Research Teams,… Continue reading “Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week
“Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori
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… Continue reading “Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori
Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia
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… Continue reading Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia
Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey
Majority of Members Have Chronic Sleep Problems That Point to Insomnia, But They Aren’t Diagnosed With The Condition CAMBRIDGE, Mass.— September 23, 2013—Results from a new survey of 5,256 PatientsLikeMe members around the world reveal nearly one-third of respondents—people who live day to day with life-changing conditions—never (5%) or rarely (25%) get a good… Continue reading Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey
“I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn
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… Continue reading “I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn
“My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease
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… Continue reading “My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease