When we talk about kidney disease, chronic kidney disease (CKD) often dominates the conversation. However, there’s another category of kidney conditions that affects thousands of people worldwide yet receives far less attention: primary glomerular rare kidney diseases (RKD). These conditions present unique challenges for patients and healthcare providers alike, requiring specialized approaches to diagnosis and… Continue reading Primary Glomerular Rare Kidney Disease (RKD) vs Chronic Kidney Disease (CKD), Differences, Symptoms and Treatment
Category: Rare Diseases
What’s Positive About Disease?
It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness. In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we… Continue reading What’s Positive About Disease?
How is Alpha-1 Different from Chronic Obstructive Pulmonary Disease?
Have you ever noticed a sudden cough come on that doesn’t seem to want to go away? Or felt strong during exercise one day, then found yourself getting short of breath over the next few weeks? Maybe you notice it’s getting a little harder to breath as the years go on. Chronic cough, shortness of… Continue reading How is Alpha-1 Different from Chronic Obstructive Pulmonary Disease?
9 Anti-Inflammatory Foods to Fight Chronic Illness
Estimated reading time: 6 minutes Eat Your Way to Relief: 9 Powerful Anti-Inflammatory Foods to Fight Chronic Illness If you’re living with a chronic illness, there’s a good chance your doctor has suggested altering your diet to help reduce or eliminate inflammation in the body. Increasing evidence suggests that there is a link between inflammation… Continue reading 9 Anti-Inflammatory Foods to Fight Chronic Illness
Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one
Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors. She’s living with autonomic neuropathy, a rare disease that prematurely ended her career as a registered nurse. In her time as an RN, she was often charged with navigating the ins and outs of insurance companies on behalf of her patients, something she… Continue reading Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one
Recapping with our Team of Advisors!
Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team… Continue reading Recapping with our Team of Advisors!
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
Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”
Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”
Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”
In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here. What were the most noticeable changes you had to make in your daily life? [Keith]… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”
“Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand
Many of you have seen our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. Well for the first time on our blog, we’re talking with a “Facebooker.” Kim started her Facebook page, Pulmonary Fibrosis Awareness, after her… Continue reading “Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand