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Talking brain donation with Dr. Deborah Mash

Dr. Deborah Mash is a professor of neurology and molecular/cellular pharmacology at the University of Miami School of Medicine. She’s also the director of the university’s Brain Endowment Bank, and she recently spoke with PatientsLikeMe about her research and exactly what goes into donating your brain to science. As she says, “we still know very little about that which makes us uniquely human” – read her Q&A interview below. What led you to study diseases of the brain?  The brain is the next biologic frontier. We have learned more about the human brain in the past twenty years than throughout all of human history. And, we still know very little about that which makes us uniquely human – our brain. I was always very interested in the anatomy and the chemistry of the brain and in disease-related Neuroscience. I consider it a privilege to study the human brain in health and disease. How would you explain the process of brain donation to PatientsLikeMe members who might be new or uncomfortable with the idea of donating this organ to science? Brain donation is no different than donating other organs after death. Organ and tissue donations can give life or sight to …

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

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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Q & A with Mary Ann Singersen, Co-Founder/President of the A.L.S. Family Charitable Foundation

In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, and friend of Jeff Cole, was diagnosed with ALS. They immediately went to work trying to find new ways to slow Stephen’s progression, and after 6 years of trial and error, they built PatientsLikeMe in 2004. Mary Ann Singersen also has family experience with the neurological condition. Her father, Edward, was diagnosed two years before Stephen, and she co-founded the A.L.S. Family Charitable Foundation, now a partner of ours here at PatientsLikeMe. Mary Ann recently sat down for a blog interview and spoke about her inspiration to start the organization, her philosophy about ALS and what advice she would have for anyone living, or caring for someone, with ALS. Can you share with our followers how your own family’s experience with ALS inspired you to start the A.L.S. Family Charitable Foundation?  My father, Edward Sciaba Sr., was diagnosed with ALS in 1995. Going through this ordeal really opened my eyes to the plight of not only the patients but their families as well. In 1998 he lost his battle with ALS. Our Co-Founder Donna Jordan also lost her brother Cliff Jordan Jr. to ALS the same year. (Our …

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Caregivers and companions – PatientsLikeMe members talk about their service animals

Service animals are often a topic of conversation in the PatientsLikeMe community, and many members frequently share their experiences with their furry friends. For example, Ted wrote about his service dog Catti-Brie in his blog interview. Here’s what other members are sharing about their animals: “Just last night when I was having a rough dream [my dog] stood with his paws front paws on the bed and barked till I picked him up and he laid across me and snuggled me to sleep again.” “I have a mobility service dog that helps with my balance. It’s like having a smart cane. When we go for walks she wears her mobility harness, but when we are home she only wears it when I’m having a bad day. She is also trained to do many other things like get items for me, and pick up things I dropped. She can also turn on/off the lights and open/close doors.” “Mali is my mobility and medical alert service dog. She has saved my life twice so far… as well as told two of my friends when they had tumors. She went through a spell when she was younger when she thought she had to …

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Throwback Thursday: Dr. Steve Feldman speaks about psoriasis and medication adherence

In honor of Psoriasis Awareness Month, we’re throwing it back to January 2013, when we sat down with Steve Feldman, MD, PhD, and Professor of Dermatology, Pathology & Public Health Sciences at Wake Forest University School of Medicine. In his interview, he spoke about the challenges for psoriasis patients, as well as the treatment advances that may be ahead. We’ve reposted his entire interview below so you can learn about his research studies on patients’ adherence to topical treatments. As the founder of DrScore.com, tell us how rating doctors online can improve medical care. Doctors want to give their patients great medical care. Online ratings can help by giving doctors the feedback they need to know—from patients’ perspectives—such as what the doctor is doing well and what the doctor can do to enhance the quality of care in their practice. www.DrScore.com was designed to help facilitate that feedback while also giving patients a better picture—more transparency—of the quality of care physicians provide, something that wasn’t nearly so easy to do in the pre-Internet era. What do you think about PatientsLikeMe’s data-sharing platform and openness philosophy? PatientsLikeMe does a truly wonderful job taking advantage of the capabilities of the Internet to …

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Visualizing insomnia

Jenna Martin is a photographer living with insomnia, and her sleeplessness is the inspiration behind much of her work. Much like the Seeing [MS] campaign, she tries to visualize her experiences through unique photographs that capture what it feels like to manage bouts of insomnia. Her photographs were recently featured in the Huffington Post, and as she told the organization, “on average, I only get a few hours of sleep every three days or so. During a bad bout, I’ll go close to five days with no sleep. When that happens, reality and the dream world become switched in a way: reality is very hazy and hard to remember, and any sleep I do get has dreams that are incredibly vivid. Everything starts to blend together; I’ll begin seeing things from a third person perspective and it’s hard to tell if I’m awake or if I’m dreaming.” Check out some of her pictures below, and see more of her work on her Facebook page. If you are living with insomnia, you’re not alone – over 2,200 people on PatientsLikeMe know what you’re going through. You can also visit the Sleep Issues forum to ask questions and learn more about sleep …

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Let’s talk about men’s health

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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Migraine: More than just a headache

June is National Migraine and Headache Awareness Month, but isn’t a migraine just a bad headache? Nope. People like Cindy McCain (wife of Senator John McCain) and 36 million Americans living with migraines will tell you otherwise. And this month, those 36 million are raising awareness and dispelling the stigma around migraines. Headaches can have many causes – dehydration, loud noises, and even feelings of stress or anxiety can trigger pain behind our eyes and forehead. So what makes migraines different? They can still be triggered by things like intense light, noise, or certain foods, but migraines are inherited neurological disorders. They can last a long time, sometimes hours.1 Migraines can also be accompanied by auras (a visual or auditory perception that a migraine is about to strike). The people living with migraines in the US are who inspired Cindy McCain to organize the 36 Million Migraine campaign. Listen to her share her experiences with migraines on The Today Show:     If you’ve ever experienced a migraine, you’re not alone – over 7,500 people are living with migraines on PatientsLikeMe. Many have shared what triggers their migraines and how they manage the pain – join the community to share …

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Wrapping up Seeing [MS]: The invisible symptoms

Here’s a question we asked last year – how do you explain multiple sclerosis to those who don’t understand? And here are a few answers: “I’m burnt alive every day.” “A single bead of sweat can bring me to my knees.” “I can be struck down in just seconds.” Over the past year, we’ve been featuring quotes, pictures and videos from the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about visualizing the invisible symptoms of MS and raising awareness for the neurological condition. We’ve covered nine symptoms: blurred vision, pain, hot and cold, spasticity, dizziness, fatigue, brain fog, balance and numbness. If you missed anything, watch the video below for a full recap. While there may be no more Seeing [MS] photographs, there will always be more symptoms, experiences and knowledge to share to help raise awareness for all things MS. There are more than 39,000 people living with MS on PatientsLikeMe, and many have contributed their own symptoms to the Seeing [MS] forum thread. If you’ve been diagnosed with MS, visit the community today. And a very special thanks to the patients and photographers whose hard work made Seeing [MS] possible.

Arthritis Awareness 101

You may have heard that arthritis affects the joints, but did you know that it’s an umbrella term used to describe over 100 medical conditions and diseases (known as rheumatic diseases)?1 Conditions that fall underneath forms of “arthritis” include rheumatoid arthritis, gout, lupus, and fibromyalgia. And the symptoms can vary depending on the type of arthritis and the person living with the condition. May is dedicated to raising awareness for arthritis (along with schizophrenia, lupus, CINDs, ALS…) – the people in the following video shared with the United States Congress what it’s like to live with arthritis: May is drawing to a close, but it’s not too late to share your story on social media through the #ArthritisAwarenessMonth and #ArthritisMonth hashtags. And if you or someone you know has been diagnosed with any form of arthritis, the Arthritis Foundation has put together a collection of resources for everything from pain management to treatment options. Don’t forget to visit the various arthritis communities on PatientsLikeMe – 7,488 people are sharing about living with rheumatoid arthritis, 4,795 with osteoarthritis and 1,527 with psoriatic arthritis. Share this post on Twitter and help spread the word for arthritis. 1 https://www.rheumatology.org/about/arthritismonth.asp

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