condition

Dispelling the myths of schizophrenia

1 Comment / Mental Health, Patient Experiences / By

May is all about mental health awareness, and we’re continuing the trend by recognizing Schizophrenia Awareness Week (May 19 – 26). Schizophrenia is a chronic neurological condition that affects people’s sensory perceptions and sense of being, and it’s time to dispel the myths about the condition. Here are some myths and facts about schizophrenia from Northeast Ohio Medical University:1 Myth: Everyone who has schizophrenia knows that they have an illness. Fact:  Many people who have schizophrenia wait months, sometimes years, and suffer needlessly before a proper diagnosis is made and treatment begins. Myth: People with schizophrenia are dangerous. Fact: Studies indicate that people receiving treatment for schizophrenia are no more dangerous than the rest of the population. Myth: People with schizophrenia have split or multiple personalities. Fact: Schizophrenia is not a split personality disorder in any way. The National Institute of Mental Health (NIMH) states that schizophrenia can cause extreme paranoia, along with mental changes like hearing voices others cannot, feeling very agitated or talking without making sense.2 Schizophrenia affects men and women equally, and although it’s normally diagnosed in adults over the age of 45, it is also seen in children. There is no cure for the condition, but antipsychotic drugs …

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Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

1 Comment / ALS, Crohn's Disease, Epilepsy, Idiopathic Pulmonary Fibrosis, Organ Transplants, Patient Experiences, Pulmonary fibrosis, Ulcerative Colitis / By

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 how confident people are in managing their own conditions. More than 1,500 members from 9 different condition communities on PatientsLikeMe took part. They worked with our research partner Ken Wallston from Vanderbilt University to make the tool the best it can be. (Thank you to everyone that participated! This is your data doing good.) Check out the PMCSMS results and keep your eyes peeled for more ORE questionnaire results as we continue the series on the blog. What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

“I would just like to understand the ‘why’” – a conversation with PD community member dropsies

2 Comments / Parkinson's Disease, Patient Experiences / By

Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in 2009, but was experiencing symptoms since way back in 2005. And just at the start of 2014, she was also diagnosed with type 2 diabetes. Check out her interview below where she shares about her frustrating Parkinson’s diagnosis experience, how diabetes might impact her future eating habits and what she means by a family of ‘co-takers.’ Tell us about your initial diagnosis experience with Parkinson’s – on your PatientsLikeMe profile, you mention your symptoms aren’t “textbook” – what are they like? My diagnostic tale has been long, complicated, and oftentimes frustrating, like many PWP experiences, and has yet to come to a medically-agreed upon final conclusion. I don’t care what it’s called. I would just like to understand “why” before I’m actually confined to life in a wheelchair. After two years of thorough investigation, working with my PCP and including cardiac and rheumatology examinations, my …

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Making a difference for Parkinson’s disease in April

Parkinson's Disease, Patient Experiences / By

  After getting diagnosed with Parkinson’s disease (PD), PatientsLikeMe member Ed recalled “I needed to talk to people who had the disease, because only they knew what it was like…and could help me get through that initial shock… we can do much better fighting the disease as a group than we can as individuals.” And that’s why all throughout April, everyone impacted by PD is coming together to get the word out for Parkinson’s Awareness Month. PD is a chronic and progressive movement disorder that affects around 1 million people in the United States, and symptoms of the condition include tremors, stiffness and impaired balance. There is no known cure for PD, but medication and surgical options can sometimes relieve a few symptoms.1 To get PD Awareness Month started, check out one of the many events being organized in April by the Parkinson’s Disease Foundation (PDF) and the National Parkinson Foundation (NPF). You can join the NPF’s Team Hope, get involved in the PDF’s Parkinson’s Advocates in Research (PAIR) program and find local Parkinson’s resources and organizations. If you or someone you know has been recently diagnosed with PD, head over to the PD community at PatientsLikeMe, where over 8,000 …

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