disease

Turning blue for Myalgic Encephalomyelitis Awareness

Chronic Fatigue Syndrome, Patient Experiences / By

Did you know that today is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs)? CINDs include fibromyalgia, Gulf War Syndrome, Multiple Chemical Sensitivities, Lyme disease and Myalgic Encephalomyelitis (also know as Chronic Fatigue Syndrome or ME/CFS). ME/CFS is tough to diagnose because there are no tests for it, and other conditions can cause very similar […]

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Let’s talk about Huntington’s Disease

Patient Experiences / By

May is packed with mental health awareness, and we’re continuing to recognize neurological conditions through Huntington’s Disease (HD) Awareness Month. HD is a mental health condition that affects brain cells (neurons) and causes them to degenerate over time. According to the National Institute of Health (NIH), HD can only be passed down from parent to child

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The Patient Voice- Parkinson’s member Ed shares his story

1 Comment / Parkinson's Disease, Patient Experiences / By

  Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with

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“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

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Making a difference for Parkinson’s disease in April

Parkinson's Disease, Patient Experiences / By

  After getting diagnosed with Parkinson’s disease (PD), PatientsLikeMe member Ed recalled “I needed to talk to people who had the disease, because only they knew what it was like…and could help me get through that initial shock… we can do much better fighting the disease as a group than we can as individuals.” 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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“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,

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