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“Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS

6 Comments / Multiple Sclerosis, Patient Experiences / By

As PatientsLikeMe member Debbie (chilli123) says, it’s a very private decision whether or not to discuss MS openly. But as you’ll read, she’s doing more than just speaking about her MS – Debbie is spending time with others so they can better understand what life with a chronic condition is like. Debbie also talked about […]

“Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS Read More »

“Just saying” – PatientsLikeMe member Shep talks frankly about his MS

Multiple Sclerosis, Patient Experiences / By

The members of the multiple sclerosis (MS) community on PatientsLikeMe are very open when it comes to sharing about their journey, and shep0454 (aka Shep) is no exception. He recently spoke with us about his life with MS, and he pulled no punches when talking about his emotions after being diagnosed, the wonderful people he’s

“Just saying” – PatientsLikeMe member Shep talks frankly about his MS Read More »

“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF

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

PatientsLikeMe member Barbara (CatLady51) recently shared about her journey with idiopathic pulmonary fibrosis (IPF) in an interview with us, and she spoke about everything from the importance of taking ownership of managing her condition to how she hopes to “turn on the light bulb” by donating her personal health data. Read her full interview about

“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF Read More »

“Shocked” – Kim talks about life with multiple sclerosis, becoming an advocate and PatientsLikeMeInMotion™

1 Comment / Multiple Sclerosis, Patient Experiences / By

Last week on the blog, we celebrated the 6th year of the PatientsLikeMeInMotion program. And this week, we’re touching base with PatientsLikeMe member Kim (aka “2006”) who we’ve had the honor of sponsoring a bunch of times through PatientsLikeMeInMotion™. After she was diagnosed with multiple sclerosis (MS), Kim was inspired to get involved in advocacy

“Shocked” – Kim talks about life with multiple sclerosis, becoming an advocate and PatientsLikeMeInMotion™ Read More »

“I would just like to understand the ‘why’” – a conversation with PD community member dropsies

2 Comments / Parkinson's Disease, Patient Experiences / By

Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in

“I would just like to understand the ‘why’” – a conversation with PD community member dropsies Read More »

“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

3 Comments / Patient Experiences, Pulmonary fibrosis / By

  This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made

“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori Read More »

“Myeloma has not affected my day-to-day life” – PatientsLikeMe member AbeSapien shares his experience during Multiple Myeloma Awareness Month

1 Comment / Patient Experiences / By

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.    

“Myeloma has not affected my day-to-day life” – PatientsLikeMe member AbeSapien shares his experience during Multiple Myeloma Awareness Month Read More »

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

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

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