Image courtesy of the Crohn’s & Colitis Foundation of America This week (12/1 through 12/7) is Crohn’s & Colitis Awareness Week. The Crohn’s & Colitis Foundation of America (CCFA) wants to know what awareness means to you, asking, “Are you #IBDAware?” Crohns disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD), affect 1.6… Continue reading Crohn’s & Colitis Awareness Week: Are you #IBDAware?
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
Meet Christel from the PatientsLikeMe Team of Advisors
We wanted to take a minute to introduce you to Christel, one of your 2015-2016 PatientsLikeMe Team of Advisors. Christel who was 12 years old when she was diagnosed with type 1 diabetes, shares openly that she spent a lot of her teens and twenties ignoring its existence. But 32 years later, Christel has made… Continue reading Meet Christel from the PatientsLikeMe Team of Advisors
Still leading a full life – An interview with IPF member David
David’s (darbygreenboy) username comes from the village in the English countryside where he lives and is still an active member of the community. We caught up with this grandfather of 10 – a former business owner, mayor and leader of the town council to talk about living with IPF. Here’s what we learned … Tell… Continue reading Still leading a full life – An interview with IPF member David
Meet Gus from the PatientsLikeMe Team of Advisors
Say hi to Gus, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Gus is someone who’s been very competitive and focused, has always felt that there was nothing he couldn’t accomplish or overcome, and spreads positivity wherever he goes. So when he was diagnosed with familial ALS, positive SOD1 gene – unknown variant, in… Continue reading Meet Gus from the PatientsLikeMe Team of Advisors
Natalie shares her story as caregiver for her mother with Alzheimer’s disease
When was your mom diagnosed with early-onset Alzheimer’s disease? What was your mom’s diagnosis process like for you, for your mom, and for the rest of your family and friends? My mother, Maxine, was diagnosed with early-onset Alzheimer’s disease in April of 2010. She had been living on her own for about one year, following her… Continue reading Natalie shares her story as caregiver for her mother with Alzheimer’s disease
“I am not a quitter, I never have been” – An interview with lung cancer member Jacquie
For Jacquie (Jacquie1961), a business owner and entrepreneur from New Mexico, 2013 was the worst year of her life – she’d lost two beloved pets to old age and then was diagnosed with lung cancer, which soon turned into colon cancer. After rigorous chemotherapy and the adoption of a new dog, Roman, Jacquie joined PatientsLikeMe… Continue reading “I am not a quitter, I never have been” – An interview with lung cancer member Jacquie
Getting “Patients Included” right Part II: Planning a patient-centric event
You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of… Continue reading Getting “Patients Included” right Part II: Planning a patient-centric event
Compassion for all: Terry Yoas, CNA – Schwartz Center NCCY Award finalist
Tonight, the recipient of the National Compassionate Caregiver of the Year (NCCY) Award, from our partners at the Schwartz Center for Compassionate Healthcare, will be presented to one of six nominees at the 20th Annual Kenneth B. Schwartz Compassionate Healthcare Dinner in Boston. Today we’re highlighting the sixth and final nominee for the NCCY Award.… Continue reading Compassion for all: Terry Yoas, CNA – Schwartz Center NCCY Award finalist
#ChatActChange: empowered to chat, act and make change – together
On October 28, Sally Okun, our Vice President for Advocacy, Policy and Patient Safety, participated in a Twitter chat – using the hashtag #ChatActChange – aimed at empowering people living with chronic conditions to advocate for policy change. Hosted by Diabetes Social Media Advocacy (DSMA), other chat participants included policy expert Susan Dentzer, Diabetes Hands… Continue reading #ChatActChange: empowered to chat, act and make change – together
Compassion for all: Krista Nelson, MSW, LCSW, OSW-C – Schwartz Center NCCY Award finalist
Today, we’re happy to introduce the fourth of six nominees for the National Compassionate Caregiver of the Year (NCCY) Award, presented by our friends at the Schwartz Center for Compassionate Healthcare. We’ve already featured Rick Boyte, MD, Melody J. Cunningham, MD and Cheryl D. Kane, MEd, BSN, RN. Krista Nelson, MSW, LCSW, OSW-C Providence Cancer… Continue reading Compassion for all: Krista Nelson, MSW, LCSW, OSW-C – Schwartz Center NCCY Award finalist