As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”
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.
Finding Peace, Confidence and Lifelong Friends: An Interview with Psoriasis Patient Erica
Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9. Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started… Continue reading Finding Peace, Confidence and Lifelong Friends: An Interview with Psoriasis Patient Erica
Partnering with Patients to Improve Healthcare
Last week I had the pleasure of attending the Institute of Medicine’s (IOM) Partnering with Patients workshop, where PatientsLikeMe’s Health Data Integrity & Patient Safety Director Sally Okun, RN, MMHS, and PatientsLikeMe member Laura Phillips, who has multiple sclerosis (MS), shared the stage as co-presenters. It was a novel approach to incorporate a patient co-presenter into… Continue reading Partnering with Patients to Improve Healthcare
Psoriasis and Bullying
Teasing.Physical violence.Staring.Social isolation.Name-calling. Many of our members with psoriasis, a chronic autoimmune condition that can produce red, scaly patches and other skin symptoms, report experiencing various forms of bullying while growing up. One relays the story of a teacher who repeatedly sent her to the nurse’s office, assuming that she had a contagious condition. Another… Continue reading Psoriasis and Bullying
A Good Surprise: An Interview with Fibromyalgia Member DarkAuburn
Did you know we now have more than 30,000 members in our fibromyalgia community? In honor of this major milestone, we decided to interview DarkAuburn, who joined in 2009. She’s a three-star member, which means she’s earned our top star rating for sharing complete, in-depth information about her fibromyalgia symptoms, treatments, quality of life and… Continue reading A Good Surprise: An Interview with Fibromyalgia Member DarkAuburn
Coping with Changes in Physical Appearance
When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions. But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience. For example, how do you deal with hair loss, facial swelling, weight… Continue reading Coping with Changes in Physical Appearance
What Would You Tell Yourself 10 Years Ago?
The beginning of a new year is always a time for reflection. You look back, you look ahead and you try to find the big picture. For patients living with chronic health conditions, a new year can be an opportunity to implement and share lessons learned along the way – about how to cope, manage… Continue reading What Would You Tell Yourself 10 Years Ago?
A Patient Poem for the Modern Age
Can you be friends with someone you’ve never met in person? The members of our online health community – now 300, 000+ patients strong – think so. In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone. As evidence, here… Continue reading A Patient Poem for the Modern Age
My War with Psoriasis: An Interview with British Blogger Simon
Welcome to the latest installment of our “Spotlighted Blogger” series. Earlier this year, we focused on psoriasis bloggers, including Lissa, Alisha B., Jessica and Joni, and today we’re pleased to add a male perspective to the mix. PatientsLikeMe member Simon’s witty blog, entitled My Skin and I, discusses his decade-long battle with psoriasis, a chronic autoimmune condition that… Continue reading My War with Psoriasis: An Interview with British Blogger Simon
Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe
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