It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness. In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we… Continue reading What’s Positive About Disease?
Category: Organ Transplants
Tips for Your Physical (and Mental) Health Post-Transplant
By: Alicia McAuliffe-Fogarty, Ph.D., Vice President of Research and Client Success at PatientsLikeMe Transplant surgeries have come a long way over the years, but unfortunately, there are still many risks involved with these life-saving procedures. It is normal for patients and family members to feel a range of emotions during the transplant journey – from… Continue reading Tips for Your Physical (and Mental) Health Post-Transplant
4 Tips for Preventing Organ Transplant Rejection
After a long wait on the transplant list, you finally get your transplantation surgery. You immediately start to feel better, but suddenly you notice some tenderness over the transplant site. You may even begin to experience flu-like symptoms such as fever, chills, and body aches. While this could be an infection, it could also be… Continue reading 4 Tips for Preventing Organ Transplant Rejection
France flips the rules on organ donation
February 14th isn’t just Valentine’s day, it’s also National Donor Day. Did you know there are currently around 120,000 people waiting for a life-saving organ donation in the United States today? What better time to take a look at some of the measures other countries around the world are taking in order to combat their… Continue reading France flips the rules on organ donation
Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results
Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at… Continue reading Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results
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
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”
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
Preparing for Life After an Organ Transplant
Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant. Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe. Split equally in gender with ages ranging from 25 to 60 years old, our discussion… Continue reading Preparing for Life After an Organ Transplant