Epilepsy

Epidiolex: First FDA-approved drug made from cannabis component (CBD)

Epidiolex: First FDA-approved drug made from cannabis component (CBD)

In a historic move, the U.S. Food and Drug Administration (FDA) recently approved Epidiolex — an epilepsy medication made from purified cannabidiol (CBD), found in cannabis. Read all about it and what it could mean for the future of cannabis-based treatments. As background, see these other recent write-ups we’ve done on medical cannabis/marijuana and CBD. What is Epidiolex? Epidiolex “is a liquid formulation of pure plant-derived cannabidiol as a treatment for various orphan pediatric epilepsy syndromes,” according to GW Pharmaceuticals, the U.K.-based company that markets the medication (an oral solution). Some other info to keep in mind: Limited scope of approval — The FDA approved the treatment specifically for two rare and severe forms of child-onset epilepsy — Lennox-Gastaut syndrome and Dravet syndrome — in patients 2 years of age and older. No THC — Epidiolex is made from purified CBD and does not contain tetrahydrocannabinol (THC), the component of marijuana that causes a euphoric “high.” Thorough research — Researchers studied the treatment’s effectiveness in three randomized, double-blind, placebo-controlled clinical trials involving 516 patients. Epidiolex (taken along with other medications) helped reduce the frequency of seizures when compared with a placebo. Research by DailyCBD.com also found the medication has a very low potential for abuse. Side effects — The FDA says …

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Cannabidiol (CBD) oil and product FAQs: Fad or effective? Legal or not?

Trending: Cannabidiol (CBD) oil, gummies, tinctures and more. Why are cannabis products gaining popularity as medical treatments and in general? As more states have legalized medical marijuana, more people have shifted their views on cannabis treatments (like former Speaker of the House John Boehner’s recent change of heart). And last month, an advisory panel at the U.S. Food and Drug Administration (FDA) unanimously recommended a medication made from CBD for some forms of epilepsy. CBD comes from cannabis/marijuana but has some key differences. So, let’s take a closer look at CBD products and some FAQs, like, do they work and are they legal? What is CBD? Short answer: Cannabidiol (pronounced canna-bid-EYE-ol) or CBD is a chemical found in cannabis plants that does not produce a “high.” More info: Cannabis plants can produce more than 100 different types of cannabinoids, a type of chemical that reacts with receptors in the brain. The two most common cannabinoids found in medical marijuana are THC (delta-9-tetrahydrocannabinol) and CBD (cannabidiol). THC is responsible for producing the mental and physical effects of medical marijuana. CBD has many of the same therapeutic qualities as THC, but without psychoactive effects. (For even more info, read our report called “Weed 101: How and why patients use medical marijuana.”) …

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Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions

In honor of National Women’s Health Week, Team of Advisors member Ginny (Mrslinkgetter) shares what it’s like to live with multiple health conditions – including major depressive disorder (MDD), generalized anxiety disorder and epilepsy – as well as grief following the death of her son (who also had epilepsy and major depression). On PatientsLikeMe, hundreds of members report living with epilepsy along with depression and/or anxiety. “I’ve had anxiety from my earliest memories,” she says. In her early 30s, she also began experiencing MDD. She was dealing with a move, very active children, and worsening migraines, pain and other symptoms. “It was the perfect storm,” she says. Read on for more of her story, plus her tips for women dealing with multiple health conditions in their family. My name is Ginny. I had 12 years of misdiagnosis, until I was appropriately diagnosed with epilepsy, psoriatic arthritis, major depression and anxiety. In the middle of dealing with my own health issues, my son was diagnosed with epilepsy. I felt overwhelmed – extreme exhaustion beyond the norm for a mom and wife. When I started Topamax, a seizure medication for my epilepsy, it raised my anxiety and I told my neurologist I …

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Meet Ginny from the PatientsLikeMe Team of Advisors

Say hello to Ginny (Mrslinkgetter), a case manager and family partner with Youth Mobile Crisis Intervention living with depression and epilepsy.  She’s also a member of the 2016-2017 Team of Advisors. Check out what Ginny had to say about living with depression and epilepsy, the loss of her son, and how being her own advocate and the support of others helps her deal with stigma: What gives you the greatest joy and puts a smile on your face? My first greatest joy that puts a smile on my face is spending time with my granddaughter! (She is 2 and the cutest girl on the planet by my biased opinion!). My second greatest joy is connecting with people using either my journey with chronic health issues, or my son’s and being able to help them. I often edit my son’s story a bit if I believe the way his life ended might cause more harm to them, especially my clients. What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges? People have pre-conceived ideas about depression, anxiety, and seizures and even …

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In her own words: Letitia shares about her new brain for Epilepsy Awareness Month

Have you met Letitia (Letitia81) from the epilepsy community? Four years ago, her research on PatientsLikeMe led her to the brain surgery that forever changed her life — she’s now seizure-free after three decades. Things are much different now for Letitia, and she’s written all about her before and after in a recent article for WBUR (Boston’s NPR news). And as it’s National Epilepsy Awareness Month, we’re passing along her firsthand account of her new normal below. Check it out. After 3 Decades of Seizures, Life with My New Brain By Letitia Browne-James I was 31 when I began to think with my new brain. I’d been diagnosed with epilepsy when I was 11 and struggled with forgetfulness, interruptions in my thoughts and a lack of focus my entire life. I didn’t know that these were classic signs of brain fog, a symptom of epilepsy. I knew that my classmates seemed to grasp math and history more quickly than I did. Sometimes, I felt like I couldn’t understand things completely, no matter how many times I read or listened to my teachers’ explanations. It was a terrible feeling. I had seizures, too, and they worsened as I grew older, appearing …

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PatientsLikeMe Welcomes Next Patient Team of Advisors

  CAMBRIDGE, Mass, November 14, 2016—PatientsLikeMe has named 11 members to its patients-only 2016–2017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners. “Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.” More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington. John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and …

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“I am working on all of it slowly” — Member David opens up about his experience with PTS

Meet member David (david61060), a United States Air Force veteran who’s living with multiple conditions including PTS, sleep apnea, and epilepsy. When we caught up with him, David shared what it was like to grow up as a “navy brat,” his experience in the military, and how It took him more than nine years to admit to himself that he had PTS. Below, see what he has to say about triggers, coping with more than one condition, and the value of connecting with others on PatientsLikeMe. Tell us a little about yourself. To tell you about myself … well I was a navy brat and grew up mostly around just military kids and people connected with the military, every 3 to 4 years moving to a new base. Except in the 70s we stayed in the Republic of Panama for 6 years, leaving there in 1976. I was 16 — that was the hardest move. First year of high school … leaving behind a lot of friends that I knew I would never see again. Moving to California and graduating high school, I went into the Air Force. In my 15 years I saw a lot and did a lot …

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Your data doing good: The POEM Study

When you share your health data, we all learn Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need. During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Here’s a great example: the POEM Study, which showed that the secret ingredient to managing your health may just be patients like you. PatientsLikeMe was founded on a simple idea: when patients connect with each other and share their experiences, they can learn how to better manage and treat their disease and improve their outcomes. Over the years, members proved this is possible time and again. But would a rigorously-conducted scientific study confirm what we already thought to be true? Our partner UCB wanted to work with us to find out. They helped to build and grow the epilepsy community on PatientsLikeMe …

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Epilepsy Awareness Month: The value in helping others

It’s November, which means it’s Epilepsy Awareness Month. During our #NotAlone campaign, we shared how PatientsLikeMe member Letitia’s experience on the site helped her feel less alone in living with epilepsy. Letitia (Letitia81), a member of our 2014-2015 Team of Advisors, explains: “I enjoyed connecting with others suffering from seizures and exchanged ideas about diagnostic tools such as the 72 hour EGG, treatments, triggers and the like. The most beneficial data that I found on this site was learning about epileptologists and more about epilepsy surgery. Prior to finding out about such a specialists, I continued to use the ineffective treatments given to me by general neurologists for 21 years. After doing some more research on the epileptology, I fired my neurologist and went to see the epileptologist in my area, who was able to perform special testing to accurately diagnose and recommend epilepsy surgery for my condition. As a result, I underwent pretesting last year for epilepsy surgery and after successfully passing all pre-test, I had my surgery (Left Temporal Lobectomy) on August 16, 2012 and have been seizure free ever since! My surgery was very successful and the chances of me having seizures again is very unlikely. I’ve …

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Recapping with our Team of Advisors!

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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