Getting the right diagnosis can take many years, or in the case of PatientsLikeMe patient Pampe, many decades. After experiencing her first Lyme disease symptom in 1973, it was not until 2012 that she finally received a diagnosis that explained her many symptoms. Discover what hindered the process and what’s she learned along the way… Continue reading Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe
Category: Patient Experiences
Building a True Picture of Diabetes During American Diabetes Month
November is American Diabetes Month, and this year, the American Diabetes Association is working to reshape the understanding of diabetes. The goal is to raise awareness of the fact that diabetes is life-changing disease with a huge societal impact – and not a minor hindrance, as some people think. As part of this mission, the… Continue reading Building a True Picture of Diabetes During American Diabetes Month
The Five Different Types of Psoriasis
On Monday, we recognized World Psoriasis Day on our blog, and today we’d like to dig a little deeper into this lifelong autoimmune condition, which can cause skin lesions on almost any area of the body as well as psoriatic arthritis. Did you know that there are several types of psoriasis, and that they can… Continue reading The Five Different Types of Psoriasis
Leaving a Legacy of Data at PatientsLikeMe
Recently, our ALS community mourned the loss of Persevering, a highly proactive three-star member who was known for his unfailing efforts to support fellow patients, record and share data, report website problems and recruit ALS clinical trial participants. Offline, he was also a tireless advocate for ALS awareness and research, attending conferences and lobbying on… Continue reading Leaving a Legacy of Data at PatientsLikeMe
Putting Psoriasis on the Map for World Psoriasis Day
Today, October 29th, is World Psoriasis Day, sponsored by the International Federation of Psoriasis Associations. Here in the US, the National Psoriasis Foundation has created a special website – WorldofPsoriasis.com – for the occasion that illustrates the global nature of this chronic autoimmune disease, which affects 125 million people worldwide or nearly three percent of… Continue reading Putting Psoriasis on the Map for World Psoriasis Day
Spotlighted Author: Parkinson’s Humorist Bev Ribaudo on Dispensing Laughter
PatientsLikeMe member Bev Ribaudo (“YumaBev”) was diagnosed with Parkinson’s disease (PD) at age 47, but it hasn’t dampened her flair for comedy. “Humor comes naturally to me, and a little disease like Parkinson’s can’t take it away,” she says. In fact, her condition has given her a new purpose: entertaining other “Parkies” with her deep… Continue reading Spotlighted Author: Parkinson’s Humorist Bev Ribaudo on Dispensing Laughter
Rediscovering Life’s Simple Pleasures: An Interview with a Heart Patient
Last week, we recognized World Heart Day on the blog and discussed why there is an urgent need for awareness about heart disease and stroke, the world’s number one killer. We also talked about how heart disease can be an abstract concept until you are exposed to someone’s personal story. That’s why we are pleased… Continue reading Rediscovering Life’s Simple Pleasures: An Interview with a Heart Patient
Recognizing the Rare Disease Community’s Champions of Hope
Did you know that 1 in 10 people worldwide have rare and genetic conditions? PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect… Continue reading Recognizing the Rare Disease Community’s Champions of Hope
Creating Your “A Team” for Health
Today’s guest post is written by PatientsLikeMe Vice President for Advocacy, Policy and Patient Safety Sally Okun, RN, MMHS. Getting health care can often feel like you’re trying to put together a difficult jigsaw puzzle, only to find that some of the pieces are missing. Even under the best circumstances, navigating the health care system is… Continue reading Creating Your “A Team” for Health
World Heart Day: Taking Prevention to Heart
Did your heart beat a little faster this weekend? This past Saturday was World Heart Day, sponsored by the World Heart Federation. Founded in 2000, this global event was created to educate the public about heart disease and stroke, the world’s leading cause of death, claiming 17.3 million lives each year. What’s a major concern… Continue reading World Heart Day: Taking Prevention to Heart