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“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 […]

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Making fibromyalgia visible this May

2 Comments / Fibromyalgia, Patient Experiences / By

The National Fibromyalgia and Chronic Pain Association (NfmCPA) is recognizing Fibromyalgia Awareness Month with an awesome theme – “C.A.R.E. & Make Fibromyalgia Visible.” C.A.R.E. stands for Contribute, Advocate, participate in Research, and Educate others about fibromyalgia, and that’s exactly what’s going on throughout May. Fibromyalgia (commonly shortened to “fibro”) causes widespread body pain or aching muscles – myalgia –

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Diabetes, behavioral changes and a surprise donation: An interview with Melinda Maryniuk, MEd, RD, CDE, FADA

1 Comment / Diabetes, Patient Experiences / By

Diabetes Alert Day is just around the corner, and to get a jump start on raising awareness for this chronic condition, we recently caught up with Melinda Maryniuk. She’s the Director of Clinical Education Programs for the Joslin Health Solutions division within Joslin Diabetes Center. Her areas of special interest include nutrition, patient education, behavior

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Spotlighted Blogger: Interview with Lissa of “Psoriasis Girl’s Point of View”

12 Comments / Patient Experiences / By

Want to connect with and learn from psoriasis patients like you? Join PatientsLikeMe Now! (It’s free) Welcome to the sixth installment of our “Spotlighted Blogger” series.  So far, we’ve interviewed patient bloggers living with gastroparesis, type I diabetes, bipolar I disorder, Parkinson’s disease and ALS, and today we introduce Lissa, a PatientsLikeMe member who has lived

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Patient Choices: The Deciding Factors

Conditions, Epilepsy, HIV/AIDS, Multiple Sclerosis, Parkinson's Disease, Patient Experiences / By

In a recent series on patient choices, we’ve highlighted a lot of the decisions patients like you have to make on a daily basis.  A few weeks ago, David S. Williams kicked off the series with a blog about the treatment and career decisions that patients like you, and his mother, have made.  Kate Brigham

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Announcing the PatientsLikeMe ALS Genetics Search Engine

3 Comments / ALS, Research / By

This month marks the 3-year anniversary of our flagship ALS community.  While there have been so many exciting milestones we’ve reached in that time, we’re always looking at ways to bring new insight to this disease. Today, we’re announcing the launch of our Genetics Search Engine for people with ALS.  Imagine finding other patients just

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A new gene for ALS: What sharing your genetics could mean for research

15 Comments / ALS, Patient Experiences, Rare Diseases, Research / By

In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS,

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