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
Category: Fibromyalgia
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?
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
What Do You Know About Endometriosis?
March is Endometriosis Awareness Month, which means it’s a good time to brush up on this common women’s health problem. For example, did you know that endometriosis gets its name from endometrium (en-doh-MEE-tree-um), the tissue that lines the uterus? Or that this often painful condition occurs when that tissue begins to grow in other places,… Continue reading What Do You Know About Endometriosis?
Coping with Holiday Stress and Blues
It’s the most wonderful time of the year. Or is it? The holidays can be a time of merriment and joy marked by festive parties and family reunions. But they can also be quite challenging. Despite the great cheer advertised everywhere you look, some people find themselves struggling with stress, anxiety, loneliness and/or depression. This… Continue reading Coping with Holiday Stress and Blues
What Patients Are Thankful For
Thanksgiving is a time for remembering all the reasons you have to be grateful. For patients who face numerous health challenges, this can mean reminding yourself of all the things you have gained – not lost – since your diagnosis. One theme that we’re especially proud to hear our 120,000+ members express is how thankful… Continue reading What Patients Are Thankful For