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“MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza

2 Comments / Conditions, Multiple Sclerosis, Patient Experiences / By

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 […]

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Living with hope – An interview on AKU with Alycia and Nate

2 Comments / Patient Experiences, Rare Diseases / By

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,

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A life well lived: Giving and sharing with PatientsLikeMe member Geof

9 Comments / Conditions, Multiple Sclerosis, Patient Experiences / By

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

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“Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week

Crohn's Disease, Patient Experiences, Ulcerative Colitis / By

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,

“Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week Read More »

“Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

Idiopathic Pulmonary Fibrosis, Patient Experiences / By

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

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Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia

1 Comment / Multiple Sclerosis / By

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

Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia Read More »

“I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn

Patient Experiences / By

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

“I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn Read More »

“My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease

12 Comments / Patient Experiences / By

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

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“Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.

Multiple Sclerosis, Patient Experiences / By

For our latest patient spotlight interview, we’re talking with Ted. Some of you may know him on PatientsLikeMe as sirsmedley’s and he’s been sharing his journey with the community since 2010. Ted was diagnosed with multiple sclerosis (MS) back in 2009 and he recently took some time to talk with us about a bunch of

“Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted. Read More »

“Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori

6 Comments / Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis / By

As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Lori, an idiopathic pulmonary fibrosis (IPF) patient who started blogging about her journey back in October 2011. Her blog is

“Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori Read More »

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