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
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.
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
Today’s Photo: 2012 Ride for Dads in Minnesota
Earlier this month, we shared a video interview with PatientsLikeMe member Wayne Sticha, who founded the Ride for Dads in 2010 to raise awareness of prostate cancer. Since September is National Prostate Cancer Awareness Month, we wanted to close out the month by sharing one of Wayne’s photos from 2012 Ride for Dads, which involved… Continue reading Today’s Photo: 2012 Ride for Dads in Minnesota
What We’ve Uncovered About Psoriasis in the Summertime
Want to connect with and learn from psoriasis patients like you? Join PatientsLikeMe Now! (It’s free) Are people with psoriasis more likely to cover up with pants and long sleeves in warm weather? Or are they okay with “showing some skin” in shorts and tank tops? This is just one of the things we set… Continue reading What We’ve Uncovered About Psoriasis in the Summertime
How Social Media Helped Me Adjust to My New Life: An ALS Patient Essay
Want to connect with and learn from others with ALS? Join PatientsLikeMe Now! (It’s free) “Social media is the MOST important means of socialization, communication and education for patients and their caregivers today, particularly with a disease like ALS where our minds are still sharp and active inside our failing bodies. Sites like PatientsLikeMe, Facebook… Continue reading How Social Media Helped Me Adjust to My New Life: An ALS Patient Essay
How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years. A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me: My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.” Her patient… Continue reading How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
How Social Media Is Changing Research (Part I): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years. A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me: My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.” Her patient… Continue reading How Social Media Is Changing Research (Part I): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
Add Your Voice During National Recovery Month
Are you in recovery from an addiction or mental health disorder – or do you know someone who is? The theme for National Recovery Month 2012, sponsored by the Substance Abuse and Mental Health Services Administration (SAMHSA), is “Join the Voices for Recovery: It’s Worth It!” There are several different ways to participate in this… Continue reading Add Your Voice During National Recovery Month
The Ride of His Life: An Interview with Prostate Cancer Survivor Wayne Sticha
“I wanted to share my story to, frankly, save other men’s lives. I discovered that very few knew anything about [prostate cancer]. Even less had had the PSA test.” – Wayne Sticha, 64, Founder of Ride for Dads Over the summer, we shared two interviews with PatientLikeMe members conducted by our partner Patient Power: one… Continue reading The Ride of His Life: An Interview with Prostate Cancer Survivor Wayne Sticha