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
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.
PatientsLikeMe’s Jamie Heywood Talks with INSEAD Knowledge
“That’s why we built PatientsLikeMe, to lower the cost of discovering new treatments and to measure and understand disease. Together, this community can help reduce the time to determine what works.” –Jamie Heywood While attending the 2012 INSEAD Healthcare Alumni Summit in London last fall, PatientsLikeMe Co-Founder and Chairman Jamie Heywood sat down with INSEAD… Continue reading PatientsLikeMe’s Jamie Heywood Talks with INSEAD Knowledge
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
New Efforts Underway to Improve Care for Veterans
With financial support from UCB, the Department of Veterans Affairs and PatientsLikeMe will study patient-reported outcomes. CAMBRIDGE, Mass. — Jan 22, 2013 — Today, the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE), biopharmaceutical company UCB and health data-sharing website PatientsLikeMe announce a new study to better understand what factors improve health outcomes for veterans with… Continue reading New Efforts Underway to Improve Care for Veterans
Psoriasis, Adherence and More: An Interview with Dermatologist Dr. Steve Feldman
Dr. Steve Feldman, MD, PhD, is Professor of Dermatology, Pathology & Public Health Sciences at the Wake Forest University School of Medicine. The author of more than 500 peer-reviewed medical articles, Dr. Feldman is well-known for his research studies focused on patients’ adherence to topical treatments as well as for founding www.DrScore.com, an online doctor… Continue reading Psoriasis, Adherence and More: An Interview with Dermatologist Dr. Steve Feldman
A Brief History of AKU, the First Genetic Disease Discovered
Last week, we announced that we are creating the first open, global registry for alkaptonuria (AKU), in collaboration with the AKU Society. You may not have heard of this extremely rare disease – which causes a severe, early-onset form of osteoarthritis – but it plays an important role in the history of genetic diseases. In… Continue reading A Brief History of AKU, the First Genetic Disease Discovered
Navigating the Healthcare System with Disabilities
Are medical facilities prepared to meet the needs of disabled individuals? It would seem reasonable to think so, but according to PatientsLikeMe members, that’s not always the case. For example, consider the case of a female patient using a powered wheelchair who doesn’t have the upper body strength to transfer herself out of the chair. … Continue reading Navigating the Healthcare System with Disabilities
PatientsLikeMe and AKU Society to Develop World’s First Open Registry for Alkaptonuria Patients
Online Patient Network to Connect Patients With Rare Disease, Create Valuable Data for Research CAMBRIDGE, Mass. — January 9, 2013 — PatientsLikeMe and the AKU Society are working together to create the first open, global registry for patients with alkaptonuria (AKU), one of the world’s rarest diseases and the first genetic disease discovered. Nicknamed “black… Continue reading PatientsLikeMe and AKU Society to Develop World’s First Open Registry for Alkaptonuria Patients
Write a Love/Hate Letter to Your Thyroid for Thyroid Awareness Month
Do you love your thyroid? Do you hate it? Or more importantly, do you even know where it is? A small, butterfly-shaped gland located at the base of the neck (just below the Adam’s apple), the thyroid influences the function of the heart, brain, liver, kidneys and skin. That’s why it’s so important to know… Continue reading Write a Love/Hate Letter to Your Thyroid for Thyroid Awareness Month
Live Better Together in 2013
Last year, over 170,00 patients learned from each other’s shared experiences every day on PatientsLikeMe. In 2013, we promise to continue putting the patient first. We’ll provide better, more effective ways for sharing real-world health experiences that help you, other patients like you, and organizations that focus on your conditions. You’ll hear us talk more… Continue reading Live Better Together in 2013