patient advocate

people with health conditions, PatientsLikeMe members, 2019 Team of Advisors

Meet our 2019 Team of Advisors!

We’re excited to announce the nine members who have been selected to join the 2019 Team of Advisors! This group of active members will be collaborating with PatientsLikeMe in the next year to offer feedback on new research and product development, to advocate on behalf of patients, and provide real-world perspectives to us and our partners. “It’s nice to connect with people who go through the same things that you do every day,” says on Team of Advisors member Marybeth, who’s living with multiple sclerosis and other chronic conditions. Click here to watch a 2-minute video about this group! Say hello to the team! Pictured above left to right: (Back row/standing) Marybeth (Blujnbby), living with multiple sclerosis, rheumatoid arthritis, myasthenia gravis Steven (Stunninsteve), living with multiple sclerosis Joseph (Jpo_runs), living with Parkinson’s disease Ashley (Ashley876), living with major depressive disorder and PTSD (Middle row/seated) Juana (Juanymata), living with lupus, rheumatoid arthritis, Sjogren’s syndrome Wes (Jwsexton7), living with ALS Eva (Treat2c), living with fibromyalgia, migraine, lupus, rheumatoid arthritis, Sjogren’s syndrome (Front row/seated) Sande (Sandman123), living with rheumatoid arthritis Brandy (Bstarks), living with fibromyalgia This year marks the 5th anniversary of our Team of Advisors program! As in past years, this group …

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Lupus Awareness Month: Lupus Warrior Jeanette recaps her D.C. advocacy trip

In honor of Lupus Awareness Month, meet PatientsLikeMe member Jeanette, who recently traveled to the U.S. Capitol to advocate for lupus research funding. (Psst — here are some ideas on how to “Go Purple” this May and raise awareness of lupus!) “I try to help the world,” says Jeanette Alston-Watkins (JeanetteA6872). The full-time working mom of two was diagnosed with lupus in 2005. She’s on the 2018 Team of Advisors (catch a quick video about her here) and is a passionate advocate for the Lupus Foundation of America. Lupus Advocacy Summit recap Jeanette recently attended the Lupus Foundation of America’s 2018 National Advocacy Summit in Washington, D.C. for the second year in a row. What happened at the summit? Take a peek at the agenda and read on! “We met many young Lupus Warriors from around the country and they told us their stories and their fight with this disease,” Jeanette says. On Day 1 of the two-day summit, Jeanette and other advocates heard from lupus researchers and drug developers about clinical trials for lupus treatments, particularly for childhood lupus and lupus nephritis (PatientsLikeMe has a Clinical Trial Finder where you can search by condition, location and more). Attendees also learned advocacy tips they can use year-round, practiced telling their personal stories …

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Is seasonal affective disorder real? Some call it “folk psychology”— others say it’s legit

Mental health experts first recognized seasonal affective disorder (SAD) — or depression that follows a seasonal pattern — in 1987. Some recent research has called SAD into question. What’s with the clashing theories? What do U.S. healthcare experts say, as of today? And how do people treat SAD? Read on. Questioning SAD Both culturally and clinically, most people have accepted SAD as a type of depression since it was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) about 30 years ago. But in January 2016, the journal Clinical Psychological Science published the results of a large-scale U.S. survey that questioned the validity of SAD. The authors’ conclusion? “Depression is unrelated to latitude, season, or sunlight. Results do not support the validity of a seasonal modifier in major depression. The idea of seasonal depression may be strongly rooted in folk psychology, but it is not supported by objective data.” The authors recommended that mental health professionals should possibly stop officially recognizing a seasonal aspect in the diagnosis of major depression. The DSM (diagnostic manual) still includes SAD, but the 2016 survey led some psychological experts to declare that there’s “no evidence that levels of depressive symptoms vary from season to season.” It also …

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Jokiva Bellard's lupus diagnosis

Instagram star Jokiva Bellard on living out loud with lupus: “You have to love yourself – you have to put yourself first”

Jokiva Bellard’s old wardrobe: Hoodies, jogging pants, loose clothes, long sleeves. In a word? “Tomboy. I didn’t want anyone to notice me.” She was covering up skin plaques caused by discoid lupus – which routinely brought stares and prying questions from the public. Then came the facemasks. The model, who hails from New Orleans but now lives in Dallas, had to cover her airway with a mask to avoid infection because she was undergoing chemotherapy to treat lupus. “I was like, ‘Dang it – now people are really looking at me,” she says. But that was a turning point. “It was like God was telling me, ‘I’m going to show you that you’re going to love yourself, even if I have to force you to notice it.’” We recently talked with Jokiva about her experiences with lupus, finding her voice on social media, exposing her struggles and rising above online trolls. Jokiva’s lupus diagnosis Jokiva was 17 and a senior in high school when she started experiencing back pain and a rash, initially thought to be eczema. When the rash didn’t go away with prescription eczema cream and she also started having pain in her knees and legs, she saw multiple doctors and finally a …

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How to be your best health advocate

PatientsLikeMe is pleased to announce a new collaboration with Cathy Chester, a wife, mother, advocate and the voice behind her blog, “An Empowered Spirit: Living a Healthy and Vibrant Life After 50.” You might’ve already seen Cathy’s #MoreThan story about her diagnosis and how she’s much more than MS. Here, Cathy dives into the importance of being your own best health advocate and how you can take charge of your health. Self-advocacy has become a critical part of the doctor-patient relationship. It’s no longer enough for patients to relate their symptoms to their physicians and accept the response. Patients need to ask questions; they must act like detectives solving a mystery in order to find the answers they’re looking for. If you can’t find the answer you need quickly, you may end up shuttling between specialists and wondering if the professionals will ever figure out what ails you. For example, let’s say you’re experiencing digestive issues. You start with your internist and undergo testing, but it’s inconclusive. Your doctor refers you to a gastroenterologist who performs invasive tests that produce a diagnosis. A medication is prescribed and you feel better in a few days. Weeks later your digestive issues return. Again, you call …

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#MoreThan multiple sclerosis: Guest blogger Cathy Chester’s journey as a writer, mom, advocate and optimist

As part of our ongoing #MoreThan series, we’re continuing to highlight patients’ stories of all the ways they’re more than their diagnoses. Here, Cathy Chester – blogger, wife, mother and advocate – shares her diagnosis story and how she’s much more than MS. When I was in my 20s I was thrilled to work for a large publishing house in Manhattan. It was an exciting dream job but I was competing against other recent college graduates who were all jockeying for promotions. To meet the challenge, I needed to be quick on my feet and look polished. I arrived early each morning wearing a beautifully tailored business suit and high heels. I could taste that promotion. But fate stepped in when I least expected it. My 2-inch heels gradually became unbearable to walk in and I started to struggle to maintain my balance. I finally lost the battle one day when my right shoe slipped off my foot without notice. The growing numbness in my legs and feet masked the loss of my shoe. It was time to see a doctor. After a CAT Scan, spinal tap and MRI I was diagnosed with Multiple Sclerosis. I am more than my …

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“I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story

“Aletha Meyer Pinnow, 31 … died from depression and suicide on Feb. 20, 2016.” So begins the obituary that Eleni Pinnow penned about her sister for the Duluth (Minn.) News Tribune. The candid obit went viral and struck a chord with countless readers – in the mental health community and beyond – so Eleni followed up with a piece in The Washington Post called “I told the truth about my sister’s obituary, so that others might choose to live.” We recently talked with Eleni, who is an associate professor of psychology at the University of Wisconsin-Superior. She shared more about her sister’s life and struggles, the stigma surrounding mental illness and her own experience with managing depression. You and your sister were really close. Do you have a favorite memory about her that you can share with us? One of the things that somebody said to me at my sister’s memorial was that when you were with Aletha, it was totally okay to just really be who you were and let your freak flag fly. I think that was really true; Aletha took people as they were. One of my favorite memories of her was when were adults and we …

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Getting “Patients Included” right Part II: Planning a patient-centric event

You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN). We recently spoke with patient Celeste Lee and Frank Hurst, MD, Medical Officer, Renal Devices Branch with the FDA, about the planning and consideration it took to make this event “Patients Included.” While this was the first patient-centric event KHI has held, they’ve worked to include the patient voice in all aspects of the initiative. Kidney patients and kidney patient organizations are represented on the KHI Board of Directors, and this past year the KHI Board of Directors formed a KHI Patient and Family Partnership Council (PFPC) made up of only patients and their caregivers. The PFPC helps provide strategic guidance on how to engage and include patients, their families and care partners in KHI activities. Celeste has had kidney failure from an autoimmune disease since she was 17. She’s been an advocate for decades and is now focused on patient-centered care. Celeste …

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Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop

Back in August, the Kidney Health Initiative (KHI), a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN), held a workshop called “Understanding patients’ preferences: Stimulating medical device development in kidney disease.” But this was more than a workshop – it was an event centered around the idea of “Patients Included” – a movement started back in May to involve more patients on the planning committees, stages, and in the audiences of medical conferences. Sally Okun, our Vice President of Advocacy, Policy and Patient Safety spoke at the event and notes how patient-focused the entire workshop was in that “nearly 100 people among the approximately 150 who gathered for the event were patients living with and managing kidney disease every day, many joined by their caregivers.” “The patients were very open in the discussions and direct in their questions. Many talked about their experiences with hemodialysis and how difficult it is to live a normal life when one has to be at the dialysis center three days a week for many hours,” she says. “In contrast to the conventional treatment approach, the newer developments for hemodialysis at home were very interesting, and in …

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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 research.  Find out how this active blogger and Tweeter developed a passion for data sharing in our interview below. 1.  Tell us how you first got involved in patient advocacy work. As per my PatientsLikeMe profile, this started in 2001. Two years after the loss of my only sibling to vCJD, I was approached by a UK organization called the Human BSE Foundation to act as their Vice-Chair. Quite a daunting task for a 33-year-old!! I was involved in that capacity until 2005. Over the years, my interests in science and information sharing to this day continue to diversify. I’m a great believer in complete openness and transparency as anyone who knows me in real life or via the Internet knows. One of my key assets seems to be “connecting people,” something that I started doing at the age of four. I enjoy making new …

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