Getting to know our 2014 Team of Advisors – Becky

So far, we’ve introduced you to two members of the PatientsLikeMe Team of Advisors – Dana (bipolar II) and Lisa (Parkinson’s). Today, say hello to Becky, a retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer. About Becky (aka Rebelor) Becky is a former family nurse practitioner, medically retired from military service. Used to a life in service, Becky is always prepared to get up and go, so when we called upon her to participate in the Team of Advisors, she was ready! When describing her journey with epilepsy, Becky said her initial complex partial seizures felt like divine intervention—she was waiting for the big answer or revelation, but the seizure would end just before discovery. Unfortunately, her journey with epilepsy collided with a journey with breast cancer, but she’s three years out of treatment and doing great. Becky uses her GI Bill to study philosophy, religious studies and creative writing. Becky’s view on patient centeredness Becky believes patient centeredness is the “holistic consideration of a person beyond gender and race. The cultural, spiritual, situational picture of the test subject.” Becky on being part of the Team of Advisors “Being a member of …

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What’s your epilepsy story?

That’s what everyone’s asking this November during National Epilepsy Awareness Month.  If you’ve been diagnosed, or know someone living with epilepsy, put on your brightest purple clothes and start raising awareness for this neurological condition. What are three things you need to know about epilepsy? 1 It’s a condition that affects the nervous system and causes seizures A seizure is a disruption of the electrical signals between brain cells (neurons) People are diagnosed with epilepsy after they experience two or more unexplained seizures separated by at least 24 hours Epilepsy affects about 50 million people around the world, including over 2 million in the United States alone.2 3 Although there is no cure for epilepsy, seizures can be managed and suppressed through medications, non-medication treatments such as vagus nerve stimulation, or surgery.4 5 6 To help raise awareness this month, the Epilepsy Foundation of America (EFA) has organized a series of short online videos that feature people from all over the U.S. sharing their experiences with epilepsy. Watch one of them below and check out the rest on the EFA’s “Story Days” campaign page.   Los Angeles Don’t forget to check out Letitia’s video, too – she’s a PatientsLikeMe member who …

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The Patient Voice- Epilepsy member Letitia shares her story

    What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how she’s helping others through her own experiences and the data she’s donating on PatientsLikeMe.     Share this post on twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.

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 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.

As 2013 winds down… Part I

We wanted to take a quick look back and share how the PatientsLikeMe community has continued to change healthcare for good over the last year. Thousands of members added their voices to real-time research, all while providing support to one another and sharing about their personal health experiences. It really is a group effort, so a big shout out and thank you to everyone in the community. Here are some highlights from 365 days of donating data, sharing experiences and learning more, together… What were some of the hottest topics in the forums? ALS/MND – Burning eyes Multiple sclerosis – How multiple sclerosis impacts your emotions Pulmonary fibrosis – The famous cough Psoriasis – Sun! Help or not?  Parkinson’s – PD and constipation Fibromyalgia – You look perfectly healthy Mental Health and Behavior – Identity crisis Who shared their story on the PatientsLikeMe blog? Alkaptonuria – Carolyn Multiple sclerosis – Marcia, Ted, Geof, Monica, Alys and Tricia Psoriasis – Maria, David and Erica Pulmonary fibrosis – Lori, Keith & Sarah, Jeff and Kim More than 8,000 members donated their data to a PatientsLikeMe survey, including… The 5-part Uncovering Psoriasis survey Diabetes and Stress Epilepsy “Rescue Medications” “Are You Sleeping?” insomnia …

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Raising awareness for epilepsy in many different ways

November is often seen as a month of transition – autumn gives way to winter, the holiday season fires up, and our short sleeves disappear for warm coats and sweaters. And as many of you know, November is also National Epilepsy Awareness Month. Many different organizations focus on epilepsy throughout the year, but this November, we’re all transitioning into high gear to raise even more awareness about epilepsy. The straight facts: Epilepsy currently affects 2.2 million people in the United States (and more than 60 million people worldwide) The condition is the fourth most common neurological condition in the United States More than 570,000 adults age 65 or older are living with epilepsy, along with 300,000 children under the age of 15 in the United States1 Thanksgiving isn’t the only important day in November This whole month is dedicated to sharing experiences and learning about epilepsy, but on November 7th, the Epilepsy Foundation is teaming up with Disneyland to host the first annual “Epilepsy Awareness Day at Disneyland Resort” in southern California. Children and parents living with epilepsy will get a chance to enjoy a fun-filled, stress-free day at Disneyland, and a portion of all tickets sold will be donated …

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Epilepsy “Rescue Medication” Survey results are in

PatientsLikeMe recently partnered with Acorda® Therapeutics to research how epilepsy patients respond to seizures using rescue medications, and we’re happy to announce that the results are in. Rescue meds are a type of medication used once a seizure starts to help end it faster or prevent further seizures. Has there been any 24-hour period in the last 12 months when you experienced multiple seizures, despite taking your daily anti- seizure medication?   We’d like to thank the more than 500 PatientsLikeMe epilepsy members who participated in the survey and got us to our community goal for the study. And as promised for reaching our goal, we’ve donated $2,500 to the Epilepsy Foundation for further research. At PatientsLikeMe, we know every piece of data, no matter how small, helps paint a better picture of what it’s like to live with a condition like epilepsy. Your contribution will help other patients learn more all while advancing medical research. Thanks for your contribution. Click here to download the complete survey results.

Canine Caretakers: How Service Dogs Can Help Many Types of Patients

Now that PatientsLikeMe is open to any patient with any condition, we’ve noticed more patients with different conditions sharing similar lifestyle modifications. One example is the use of a service dog. What are the benefits – both expected and unexpected – of a four-legged assistant?  We asked some of our members to talk about their service dogs’ best qualities. The Uncanny Seizure Predictor “[My seizure dog Mandy] has awakened me two times just as a seizure was about to start. I don’t know how she does it but she does. In fact, I had a seizure outside once (doesn’t happen often), and Mandy ran to a neighbor’s house and barked until they came to me.” – Mandysmother (Epilepsy patient) The Sensitive Tear Licker “He is my balance dog. He knows when I am about to have a migraine or a seizure and he even knows when I am hurting. Isn’t that funny? He licks my tears when I am crying, and he knows when to stay away from me.”  – Some1Special (Mental Health and Behavior patient) The Good-Humored Mind Reader “[My service dog Mali] was the best decision I ever made. With her I now have some of my independence …

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News Release: Survey Reveals PatientsLikeMe® Helps People With Epilepsy Improve Seizure Understanding and Medication Adherence

In today’s news… ******** BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – April 12, 2011) – In a survey amongst people with epilepsy in the U.S. who have joined PatientsLikeMe®, the leading health data-sharing website for patients, respondents indicate that better seizure understanding and improved adherence are key benefits of using the site. The majority of respondents (55%) indicate a better understanding of their seizures, while one in four (27%) report improved adherence to treatment as a result of joining the PatientsLikeMe epilepsy community. When asked about their social interactions with other patients, one in three respondents (30%) said they did not know a single other person with epilepsy before joining the site; 63% of these said they were now communicating with one or more patients on the site. The complete results from this survey of 221 epilepsy patients are being presented this week at the annual meeting of the American Academy of Neurology, in Hawaii, U.S. (April 9th-16th). In early 2010, PatientsLikeMe and UCB first invited U.S. epilepsy patients to share their seizure experiences, symptoms and treatments through the website; there are more than 3,600 members to date. UCB receives annonymized, aggregated data from the PatientsLikeMe epilepsy community…. >> Click here …

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Patient Choices: The Deciding Factors

In a recent series on patient choices, we’ve highlighted a lot of the decisions patients like you have to make on a daily basis.  A few weeks ago, David S. Williams kicked off the series with a blog about the treatment and career decisions that patients like you, and his mother, have made.  Kate Brigham then highlighted examples of the social and emotional tradeoffs you make every day.  Last week, we published the results of a recent patient poll where more than 4,000 of you answered questions about the choices you’ve made to tell (or not tell) others about your diagnosis.  (See “Patient Choices: The Shape of Sharing” and “Patient Choices:  How Open Are You Now?“) Today, we continue the series by highlighting examples of the choices patients like you have made in the past twelve months (pulled from 2010 newsletter interviews). Patient Choices About… Being Open “I decided to make my profile public with the hope that something I have experienced, have done, or could say may help someone else along the way. Because my family seems to still live with the stigma of HIV/AIDS and prefer I don’t allow others close to our family to know of my …

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