In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here. What were the most noticeable changes you had to make in your daily life? [Keith]… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”
Category: Rare Diseases
“Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand
Many of you have seen our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. Well for the first time on our blog, we’re talking with a “Facebooker.” Kim started her Facebook page, Pulmonary Fibrosis Awareness, after her… Continue reading “Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand
Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”
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”
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
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
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
Not Recognizing the “New Me”
For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself. According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help. Have you found yourself feeling resentful when family,… Continue reading Not Recognizing the “New Me”
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
Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King
You may recall that in July we shared a video about Doctors 2.0 and You, a conference focused on how physicians are using web 2.0 technology. Today we’d like to present a real-life example of this concept: Dr. Jim King, MSc, MD, FRCPC. A pediatrician at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa,… Continue reading Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King
The Importance of Open Access: An Interview with Patient Advocate Graham Steel
A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe. Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific… Continue reading The Importance of Open Access: An Interview with Patient Advocate Graham Steel