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
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.
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
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
Use It or Lose It?
You’ve all heard the phrase “use it or lose it” before. But should it be applied to patients with chronic, debilitating illnesses? That’s an ongoing debate in the PatientsLikeMe forums. Take for example this discussion of cognitive difficulties in our Multiple Sclerosis Forum. On the one hand, there’s the argument that brain exercises such as… Continue reading Use It or Lose It?
Out of the Office: PatientsLikeMe Visits ALS Pioneer Steve Saling
Earlier this month, PatientsLikeMe Co-Founder and President Ben Heywood, along with marketing intern Jenna Tobey, went to visit the Steve Saling ALS Residence, which is part of the Chelsea Jewish Foundation’s Leonard Florence Center for Living in Chelsea, MA. The foundation has been providing high-quality care for over 90 years and includes the nation’s only specialized… Continue reading Out of the Office: PatientsLikeMe Visits ALS Pioneer Steve Saling
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