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“I can see that there actually is help here.” – JustinSingleton shares his experiences with PTS

Mental Health, Patient Experiences / By

JustinSingleton is an Army veteran who recently joined PatientsLikeMe back in June, and he’s been exploring the veteran’s community ever since. This month, he wrote about his experiences in an interview, and below, you can read what he had to say about getting diagnosed with PTS, managing his triggers and the importance of connecting and sharing with fellow service members.  Can you give us a little background about your experience in the military? In 1998, I joined the Ohio Army National Guard as an Indirect Fire Infantryman – the guy that shoots the mortars out of a big tube. For six years I trained on a mortar gun, but after being called back into the Army (I left in 2004), I was assigned to an Infantry Reconnaissance platoon, and I had no idea what I was doing. Before heading to Iraq, we trained together as a platoon for six months – learning not only the trade, but to trust each other with our lives. It wasn’t until March 2006 that we arrived in Iraq, and I was assigned to the Anbar Province, which at the time was rated as the worst province of the nation. I was deployed in the …

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ORE Researcher Series: McMaster University

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Last month, you met ORE researcher Tamara Kear, PhD., R.N., CNS, CNN, and you listened to her talk about her research on hypertension, one of the factors that can lead to a person developing kidney disease. Today, we’re introducing McMaster University Professor Gordon Guyatt and students Melody Ren and Reza Mirzaie. The question they are asking is “how are patients currently receiving bad news from a medical professional, and are the guidelines doctors have on delivering bad news actually correct?” Below, listen to the three researchers talk about their work and how the ORE platform and PatientsLikeMe made their research possible. What exactly is the ORE? 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. Share this post on Twitter and help spread the word.

The Patient Voice- PTS member David shares his story

Mental Health, Patient Experiences / By

Today is PTS Awareness Day, so we wanted you to meet PatientsLikeMe community member Cpl. David Jurado, who lives with post-traumatic stress (PTS). David developed PTS while serving in the military. After he retired, he continued to deal with daily symptoms, and he encourages members to connect with others on PatientsLikeMe, because “if you want to make changes for yourself and the PTS community, you’ve got to share your story. The same thing may be happening to them.” David is not alone – and neither are you. There are more than 1,000 vets living with PTS that are part of the community. We’ve heard members like David talk about how important it is for them to connect with people who ‘get it.’ Not a veteran living with PTS? You’re not alone either. With more than 8,000 PTS members, it’s easy for anyone with PTS to share their story and get support. Share this post on Twitter and help spread the word for PTS.

ORE Researcher Series: Tamara Kear is listening to kidney patients

Patient Experiences, Research / By

Over the next few months, you’ll meet a few Open Research Exchange (ORE) researchers, and first up is Tamara Kear, PhD., R.N., CNS, CNN. She has over 20 years’ practice as a nurse caring for patients with kidney disease. Her research is focused on hypertension, one of the factors that can lead to a person developing kidney disease. Tamara has developed a scale for healthcare providers that helps them learn how well a patient is doing at home and identify barriers they are experiencing in managing their hypertension. Her goal is to develop a better tool. In her video, she explains her ORE research and her philosophy that patients should be “not just informers for researchers, but actually the researchers themselves.” What exactly is the ORE? 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. Share this post on Twitter and help spread the word.

Recapping with our Team of Advisors!

ALS, Bipolar disorder, Depression, Epilepsy, Fibromyalgia, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Rare Diseases / By

Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team is wrapping up their year-long term as advisors, we wanted to make sure we update the community on all the hard work they’ve done on your behalf! First Ever In-Person Patient Summit in Cambridge Your team of patient advisors travelled from all over the country to join us for 2 days here in Cambridge. They met with PatientsLikeMe staff, got a tour of the offices and began their collaboration together as a team! Blog Series The advisors have also been connecting with the broader community as part of an ongoing series here on the blog! This is an impressive group and we hope you’ll read through to learn more about the team.  Some of the interviews featured so far include profiles on Becky, Lisa, Dana, Emilie, Karla, Deb, Amy, Steve, Charles, Letitia and Kitty. If you haven’t had the chance to read their stories and what they’re passionate about yet, feel …

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Getting to know our Team of Advisors – Kitty

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Kitty represents the mental health community on the PatientsLikeMe Team of Advisors, and she’s always ready to extend a helping hand. She’s a social worker who specializes in working with children in foster care, and below, she shares how her own journey with major depressive disorder (MDD) has helped her truly connect with and understand the needs of both her patients and others. About Kitty (aka jackdzone): Kitty has a master’s degree in marriage, family and child therapy and has worked extensively with abused, neglected and abandoned children in foster care as a social worker. She joined PatientsLikeMe and was thrilled to find people with the same condition who truly understand what she’s going through. She lost her job as a result of her MDD, which was a difficult time for her. Kitty is very attuned to the barriers those with mental health conditions might face, and has great perspective about how to be precise with language to help people feel safe and not trigger any bad feelings. Kitty is passionate about research being conducted with the patient’s well-being at the forefront, and believes patient centeredness means talking with patients from the very beginning by conducting patient surveys and finding …

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Let’s talk about men’s health

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On average, American men live sicker and die younger than American women. Men die at higher rates than women from the top 10 causes of death, and by the age of 100 women outnumber men eight to one1. Sometimes men just don’t talk about their health problems. Or they might not go to the doctor or for their health screenings as often as women2. This month is National Men’s Health Month and it’s a time to raise awareness and encourage early detection and treatment of preventable disease among men and boys. There are several ways to get involved and join in the conversation. If you’re looking for a place to start, here are a few ideas: Join the Men’s Health Forum discussions Men make up 29 percent of PatientsLikeMe – and 81 percent of these members are sharing about their conditions, tracking their symptoms and connecting with one another in the men’s health forum. If you’re interested in learning more, visit today. Wear something blue The Men’s Health Network (MHN) is encouraging everyone to wear blue and share their pictures with the #showusyourblue hashtag on social media. Research the facts Learn about Key Health Indicators, common men’s health conditions and leading causes of death …

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“In my own words” – PatientsLikeMe member Edward shares about living with schizoaffective disorder

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Meet Edward, a member of the PatientsLikeMe mental health community. He’s been living with schizoaffective disorder since the late 1970s, and over the past 35 years, he’s experienced many symptoms, everything from paranoia and euphoria to insomnia and deep depression. Below, he uses his own words to take you on a journey through his life with schizoaffective disorder, including a detailed account of what happened when he stopped taking his medications and how he has learned to love God through loving others. How it all began: In my early twenty’s in 1977, I was doing GREAT in college, double majoring in Mathematics and Electrical Electronic Engineering and in the top 1% of my class when I started having problems with mental illness. My first symptom was an intense mental anguish as if something broke inside of my head. Then my sleep started to suffer and I would fall asleep in my college classes, which was not at all like me. Then I started having strong mood swings and I became very delusional. I experienced all of this without the use of any drugs or alcohol; in fact I have never used any street drugs or alcohol. Life became HELL and …

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Schizophrenia: Living well and working towards a cure

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Today marks the start of Schizophrenia Awareness Week, and what better way to begin than with the story of an inspiring woman who is living with schizophrenia and advocating for better treatments. Dr. Elyn Saks was diagnosed with schizophrenia as a college student. At first she struggled with her diagnosis, and it took a while before she found treatments that worked for her. Ultimately she excelled in her studies and became the Chair Professor of Law at USC’s Gould School of Law. She even won a MacArthur Genius Grant for her work in mental health research and advocacy. Recently, she sat down with Brian Staglin of Brain Waves, a video program sponsored by the International Mental Health Research Organization (IMHRO). Dr. Saks talked about her experience with schizophrenia and her work for the empathic treatment of people with mental illness. Dr. Saks’ story is just one of many. Schizophrenia affects 2.5 million adults in the United States alone, and thousands more have not been officially diagnosed.1 Schizophrenia can be difficult to recognize, as some of the symptoms, like mood swings, impulsive behavior and hallucinations (seeing or hearing things that aren’t there), are common in other mental health conditions. Schizophrenia may …

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What do you know about stress?

Patient Experiences / By

This April, some people aren’t thinking about stress – the crazy snows of winter are just about gone, flowers are blooming and temperatures are rising. But with these positive changes comes a responsibility to recognize the importance of stress and how it affects people’s health. Federal Occupational Health (FOH) has deemed April National Stress Awareness Month, and together, everyone can help raise awareness for stress, its causes and how it can be managed. The medical definition of stress is “a feeling of emotional or physical tension. It can come from any event or thought that makes you feel frustrated, angry, or nervous.”1 Stress can be acute (short-term) or chronic (long-term), and it causes a wide range of symptoms, ranging from the physical (chest pain, fatigue, muscle tremors) to the emotional (anxiety, restlessness, depression).2 And while acute stress is a natural feeling to experience, chronic stress has been linked to increased instances of health conditions like heart disease, high blood pressure and diabetes. Stress is experienced by people of all ages, genders and backgrounds – below is what the PatientsLikeMe community is saying about how stress affects them: “Stress is beyond anything I have ever faced in my life. My tremors …

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