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    FDA-Approved CBD and Why It Matters

    As cannabidiol (CBD) is becoming less stigmatized, there’s been an explosion of CBD products available on shelves and online. CBD is a compound found in the cannabis plant, though it lacks the “high” associated with marijuana. More people are hoping to access its benefits to manage a range of ailments. For those living with epilepsy, FDA approved CBD has been proven to effectively reduce seizures, especially when other treatment options just aren’t available or effective. So if you’re looking to use CBD for yourself or your child, how do you know which products have been tested and studied for safety and effectiveness so you know exactly what you’re getting? Currently, EPIDIOLEX ® (cannabidiol) is the only FDA-approved CBD medicine used to treat seizures associated with Lennox-Gastaut syndrome (LGS), Dravet syndrome (DS), or tuberous sclerosis complex (TSC) in patients one year of age and older. This FDA-approval matters because despite its rise in popularity, CBD has flown somewhat under the radar when it comes to regulating its safety and effectiveness, manufacturing protocols, and accuracy of labels. Since 2016, the Food and Drug Administration (FDA) has issued over 90 warning letters to companies making false claims about the therapeutic benefits of their products. Ingredient listings on these non-FDA approved CBD products can also be unreliable. A 2017 study in the Journal of the American Medical Association (JAMA) found that almost 70% of CBD products sold online did not contain the amount of CBD stated on the package, and in 2021, a study that raised the same concerns additionally found some CBD products were contaminated with toxins like lead. Unregulated CBD products may be risky for a few reasons. For one, without oversight from the FDA, it’s nearly impossible to know how much CBD is actually in the product, or even if the ingredients listed are consistent from batch to batch. This lack of quality and consistency standards can affect the product’s effectiveness, making it a risky choice for people wanting to use CBD to treat serious medical conditions like epilepsy. Secondly, it’s important to be mindful of potential side effects and drug interactions. The safety profile of FDA-approved EPIDIOLEX was thoroughly studied in clinical trials, so the potential safety risks and drug interactions are known. This information is not known for non-FDA approved CBD products, which can pose unknown and potentially serious safety risks, especially for people who are on multiple medications for conditions such as difficult-to-treat epilepsy. Non-FDA approved CBD products also run the risk of potential contamination. A 2020 study found some non-FDA CBD products may contain pesticides, toxic heavy metals (such as lead, copper, zinc, and cadmium) and THC, the part of the cannabis plant that can induce intoxication. In 2017, the JAMA study found that 20% of dispensary CBD products contained unlabeled, detectable levels of THC – putting many adults and children with epilepsy using non-FDA approved CBD at risk for side effects they didn’t anticipate. Currently, EPIDIOLEX is the only FDA-approved CBD medicine, and quality control starts in the greenhouse. Each cannabis plant is bred to yield high levels of CBD, and includes no heavy metals, no pesticides, no contaminants and no genetic modification. After the plants have been harvested, scientists follow a strict multi-step process to turn the raw material into highly purified CBD. The product then passes through a series of strict quality controls set by the FDA to ensure its consistency and stability, and to guarantee it’s free from contaminants. This means every bottle contains exactly what it says. Unlike other CBD products, EPIDIOLEX underwent extensive research, including three clinical studies in which the efficacy and safety profile was thoroughly evaluated in patients. Upon thorough review of the safety, efficacy, and effectiveness, the FDA approved EPIDIOLEX. With EPIDIOLEX, you know exactly what you’re getting, and this transparency includes information about potential risks and side effects. You can only get FDA-approved medicine through a doctor’s prescription, which is an advantage for anyone who wants to use CBD to help with seizures. When you get a prescription for EPIDIOLEX, your doctor will work with you to find the right dosage, as well as help you monitor for and/or avoid any unwanted interactions if other medications are also being used . Getting FDA-approved CBD also means potential coverage from your insurance, along with additional resources and support every step of the way. Like any medicine, CBD products should be evaluated for safety and effectiveness. With  FDA-approved EPIDIOLEX, you know exactly what you’re getting. Important Safety Information & Indications What is the Most Important Information I Should Know About EPIDIOLEX (cannabidiol)? Do not take if you are allergic to cannabidiol or any of the ingredients in EPIDIOLEX. EPIDIOLEX may cause liver problems. Your doctor may order blood tests to check your liver before you start taking EPIDIOLEX and during treatment. In some cases, EPIDIOLEX treatment may need to be stopped. Call your doctor right away if you start to have any of these signs and symptoms of liver problems during treatment with EPIDIOLEX: loss of appetite, nausea, vomiting fever, feeling unwell, unusual tiredness yellowing of the skin or the whites of the eyes (jaundice) itching unusual darkening of the urine right upper stomach area pain or discomfort EPIDIOLEX may cause you to feel sleepy, which may get better over time. Other medicines (e.g., clobazam) or alcohol may increase sleepiness. Do not drive, operate heavy machinery, or do other dangerous activities until you know how EPIDIOLEX affects you. Like other antiepileptic drugs, EPIDIOLEX may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call a healthcare provider right away if you have any signs of depression or anxiety, thoughts about suicide or self-harm, feelings of agitation or restlessness, aggression, irritability, or other unusual changes in behavior or mood, especially if they are new, worse, or worry you. Take EPIDIOLEX exactly as your healthcare provider tells you. Do not stop taking EPIDIOLEX without first talking to your healthcare provider. Stopping a seizure medicine suddenly can cause serious problems. What Else Should I Know When Taking EPIDIOLEX? The most common side effects of EPIDIOLEX include increase in liver enzymes, sleepiness, decreased appetite, diarrhea, fever, vomiting, feeling very tired and weak, rash, sleep problems, and infections. EPIDIOLEX may affect the way other medicines work, and other medicines may affect how EPIDIOLEX works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins, herbal supplements, and cannabis-based products. What Additional Information Applies to Women? If you are pregnant or plan to become pregnant, EPIDIOLEX may harm your unborn baby. You and your healthcare provider will have to decide if you should take EPIDIOLEX while you are pregnant. If you become pregnant while taking EPIDIOLEX, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry (by calling 1-888-233-2334). The purpose of this registry is to collect information about the safety of antiepileptic medicines during pregnancy. Because many medicines like EPIDIOLEX are passed into breast milk, talk to your healthcare provider about the best way to feed your baby while taking EPIDIOLEX. What is EPIDIOLEX (cannabidiol)? EPIDIOLEX is a prescription medicine that is used to treat seizures associated with Lennox-Gastaut syndrome, Dravet syndrome, or tuberous sclerosis complex in patients 1 year of age and older. It is not known if EPIDIOLEX is safe and effective in children under 1 year of age. Please refer to the EPIDIOLEX Medication Guide and Instructions for Use for additional important information. You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch , or call 1-800-FDA-1088. You may also contact Greenwich Biosciences at 1-833-424-6724 (1-833-GBIOSCI). EPX-25928-0222

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    Do you live with MS?
    Tired of organizing your medical records?
    If these statements apply to you, PicnicHealth can help. Click the link below to have someone else sort out your medical record hassle (for free!), and support the MS community in the process.

    11 Pandemic Trends People With Disabilities Want to Keep

    I made it. I’ve gotten my second dose of the COVID-19 vaccine. I’ve rebuilt my business that was all but dead a year ago and paid off debts. Around me, I see other businesses bouncing back and restrictions being fully lifted. I went clothes shopping yesterday and used dressing rooms that are open for the first time in 15 months. The COVID-19 pandemic isn’t gone. There are still social-distancing markers on floors, people masked up, loved ones not surviving, and businesses that will never come back. There is much grieving to be done indefinitely into the future. But we are poised with hope and we’re earnest on moving forward. Colleges are working out what in-person classes will look like this fall, and people are returning to work in office buildings. As we gradually get back what we loved about our pre-pandemic lives, I reflect on some changes — or trends — that COVID-19 caused that I think we should keep, specifically changes that have improved life for people with disabilities. 1. Working from home. OK, so I’m self-employed and I mostly work from home anyway, but I remember the days of having to go into an office, and I would have loved to have been able to do all those tasks in my own space, which is designed around my sitting disability. There are many other conditions where working from home is the better option for people (others like me with irritable bowel syndrome, for example), and now we all have seen that, for many jobs, the exact same work gets accomplished! Also, comfy pants. 2. Food delivery and “contactless” everything. This trend was heating up before COVID hit, but boy did the pandemic set it aflame. I can’t tell you how hard it can be sometimes to just get food when my fibromyalgia and chronic fatigue syndrome are acting up. Grocery delivery, online ordering with curbside pickup at restaurants and stores, and restaurant delivery have all made life a lot easier. They’re also great options for people with mental health conditions such as social anxiety disorder. 3. Social distancing. OK, I personally love (gentle) hugs, but I also love not having strangers crowding me in lines. That kind of thing seriously bothers me. Especially if they’re gum chewers (I have misophonia). Having strangers keep their distance in public is great for people who have autoimmune conditions and also some mental health conditions. 4. Sanitizing everything. I like clean. And while I do not have a compromised immune system, several people I dearly love do. 5. Online training and religious services. Gone are the days when I would totally miss church because my fibro was flaring. Now, due to their brand-new, grant-funded equipment for “online church,” I simply curl up with my phone and watch it live on Facebook! Or, I can watch the recording later. Also, I’ve finally attended some trainings as a public official when they moved to “online only.” Before, I missed everything because I can neither sit in a chair nor stand up for the hours-long sessions. Good access means having more options for people with a range of disabilities and restrictions. 6. Time off for medical care. You know how some businesses allow employees time off for not just getting the vaccine, but for recovering from the vaccine? Yeah, that should be a thing for people getting any type of treatment that helps them stay healthy. 7. Equal access to medical care. And that thing where vaccines are free for everyone? This really needs to happen regarding any treatment that prevents people from dying, including dying from suicide. 8. Conversation about access. Making sure everyone had access to the vaccine was a buzzing topic there for a while, especially making sure people from marginalized populations weren’t left out. Let’s keep talking about this for all essential services. 9. Conversations about illness, mental health and disability. I bet a lot of people learned what “immunocompromised” means and what a big deal it is to have “underlying conditions.” Chronic illness and invisible disabilities, including mental health, are being talked about more and more. Let’s keep it up. 10. Rescue pets. Oh, I hope people do keep their rescue pets. What a miracle that shelters were cleared out during the pandemic, and these best friends seriously improve life for many people. 11. Eyes wide open. Able-bodied people have gone through some very disabling things this past year, such as fearing illness or not being able to attend events. Oh, and that horrible vaccine reaction you had, with the body aches and debilitating fatigue? That’s pretty much how I feel every day. I hope everyone remembers what all this has been like, and holds these memories up for those of us who will continue to live a disabled life, with all its complications, forever.

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    Losing Your Sense of Smell Is Like Losing Yourself; How I Got Mine Back V2

    There are certain human experiences that are easy to take for granted until they’re gone. I learned this lesson the hard way when after decades of battling consistent sinus issues, I finally lost my sense of smell, and with it, so many parts of my life that previously brought me joy. Growing up on a farm in Indiana, my childhood memories are linked to experiencing nature with all of my senses. The smell of lilacs or a freshly-mowed lawn can bring me right back there. As an adult, I love cooking (and eating!), tending to my garden, and traveling – all activities that were diminished when I lost the ability to smell. In some ways, it was like losing a part of myself. It wasn’t until I was finally diagnosed with chronic rhinosinusitis with nasal polyposis (CRSwNP) that I realized I had a serious medical condition which opened new treatment options. I learned from my doctor that CRSwNP is a condition that can cause sinus pain, nose stuffiness and loss of smell. Nasal polyps are growths in the nose or sinuses. My symptoms started when I was about 30. At the time, I just thought I was one of those unlucky people who got sinus infections and colds all the time. I remember being so exhausted at work, I would take naps during the day in the first floor restroom on a dirty couch. It became my normal to constantly be sick, and when you live with something that’s chronic, you kind of just learn to push through. I got into this pattern where I’d develop a sinus infection, get prescribed steroids and antibiotics, maybe feel relief for a month or two, only to have the symptoms come back – and the cycle would start again. Eventually, though, I stopped experiencing those months of relief and lost my sense of smell completely – which is twofold. Losing my smell affected my sense of taste. Not being able to breathe through my nose affected my sleep and I was tired all the time. I remember calling my doctor and telling him I just couldn’t live like this anymore. After seeing multiple general practitioners, I finally went to see an ear nose and throat (ENT) specialist at the suggestion of a friend; I wish I had known to do that sooner. After a CT scan, he was able to diagnose me with CRSwNP. I finally had a name for everything I had been experiencing. I never knew they could be tied to a serious condition. But as the ENT said, I had so many nasal polyps growing in my nose, so I decided to undergo surgery to remove them. Surgery seemed to help at first. For about eight months I could smell again, until an asthma and allergy specialist discovered the nasal polyps were growing back. I learned later this can happen to people with CRSwNP. Luckily for me, the allergy specialist had heard of another treatment option: DUPIXENT ® (dupilumab). DUPIXENT ® is a prescription medicine used with other medicines for the maintenance treatment of CRSwNP in adults whose disease is not controlled. He spoke to me about the potential benefits and risks of treatment, including the most common side effects such as injection site reactions, and some serious side effects including allergic reactions that can sometimes be severe, eye problems, inflammation of your blood vessels, and joint aches and pain. I was a little nervous because I had never taken a biologic medicine before. But I did some research, learned that biologics are made from living cells, and was so tired of my now worsening symptoms that I decided to give it a try. Two weeks after my first DUPIXENT ® shot, I was able to smell again. Please see below for additional Important Safety Information I’ll never forget the moment that I noticed my sense of smell was back. At first, I was confused by the sensation. I remember standing in my kitchen on a Saturday morning and not being able to pin-point exactly what felt different about the room. I thought maybe it was the light that had changed. Finally, it hit me that I was actually smelling the coffee I was making. Every morning I made coffee, but this morning I was able to appreciate it after missing it for so long. The feeling was amazing, and now that I’ve been getting my DUPIXENT ® shots every other week, I’m starting to feel better enough to get back to some of my favorite hobbies. Additionally, taking DUPIXENT ® has reduced my nasal congestion and really helped with my nasal polyps. It wasn’t until I had my sense of smell back that I truly appreciated what I had lost. I realized how many childhood memories I associate with smell, and that when I couldn’t smell lilacs, I couldn’t feel my mom anymore. Now, I am travelling again, and I’m grateful that I can enjoy food in new places. I’m excited for my future because now I can experience more of what life has to offer: like the aroma and joy of cooking a big meal for people I love, smelling my roses from my driveway, and the scent of my favorite lavender candle filling my home. Of course, with DUPIXENT ®, everyone’s results are different, so be sure to consult your doctor about what’s best for you. Looking back, I wish more people knew about CRSwNP and how greatly it can impact your life. I’ve now talked to so many others living with CRSwNP, and I can’t tell you how many people I talk to who end up in tears because nobody has ever validated the real struggles they’ve experienced. But CRSwNP is a medical condition that can be debilitating. You might not think a little thing in your nose can have such a great impact, but it can. I didn’t realize it as much in the moment but looking back now, I recognize how drastically CRSwNP affected my life. With my nasal polyps under control, I’m looking forward to retirement. My husband and I plan on getting a boat and riding around North America. I can’t wait to inhale the wonderful smells at every port. IMPORTANT SAFETY INFORMATION & INDICATION Do not use if you are allergic to dupilumab or to any of the ingredients in DUPIXENT. Before using DUPIXENT, tell your healthcare provider about all your medical conditions, including if you: have eye problems. have a parasitic (helminth) infection. are scheduled to receive any vaccinations. You should not receive a “live vaccine” right before and during treatment with DUPIXENT. are pregnant or plan to become pregnant. It is not known whether DUPIXENT will harm your unborn baby. A pregnancy registry for women who take DUPIXENT during pregnancy collects information about the health of you and your baby. To enroll or get more information call 1-877-311-8972 or go to https://mothertobaby.org/ongoing-study/dupixent/. are breastfeeding or plan to breastfeed. It is not known whether DUPIXENT passes into your breast milk. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. Especially tell your healthcare provider if you are taking oral, topical, or inhaled corticosteroid medicines or if you have CRSwNP and asthma and use an asthma medicine. Do not change or stop your corticosteroid medicine or other asthma medicine without talking to your healthcare provider. This may cause other symptoms that were controlled by the corticosteroid medicine or other asthma medicine to come back. DUPIXENT can cause serious side effects, including : Allergic reactions. DUPIXENT can cause allergic reactions that can sometimes be severe. Stop using DUPIXENT and tell your healthcare provider or get emergency help right away if you get any of the following signs or symptoms: breathing problems or wheezing, swelling of the face, lips, mouth, tongue, or throat, fainting, dizziness, feeling lightheaded, fast pulse, fever, hives, joint pain, general ill feeling, itching, skin rash, swollen lymph nodes, nausea or vomiting, or cramps in your stomach-area. Eye problems. Tell your healthcare provider if you have any new or worsening eye problems, including eye pain or changes in vision, such as blurred vision. Your healthcare provider may send you to an ophthalmologist for an eye exam if needed. Inflammation of your blood vessels. Rarely, this can happen in people with asthma who receive DUPIXENT. This may happen in people who also take a steroid medicine by mouth that is being stopped or the dose is being lowered. It is not known whether this is caused by DUPIXENT. Tell your healthcare provider right away if you have: rash, chest pain, worsening shortness of breath, or a feeling of pins and needles or numbness of your arms or legs, or persistent fever. Joint aches and pain. Some people who use DUPIXENT have had trouble walking or moving due to their joint symptoms, and in some cases needed to be hospitalized. Tell your healthcare provider about any new or worsening joint symptoms. Your healthcare provider may stop DUPIXENT if you develop joint symptoms. The most common side effects in patients with chronic rhinosinusitis with nasal polyposis include injection site reactions, eye and eyelid inflammation, including redness, swelling, and itching, sometimes with blurred vision, high count of a certain white blood cell (eosinophilia), trouble sleeping (insomnia), toothache, gastritis and joint pain (arthralgia). Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of DUPIXENT. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Use DUPIXENT exactly as prescribed by your healthcare provider. It’s an injection given under the skin (subcutaneous injection). Your healthcare provider will decide if you or your caregiver can inject DUPIXENT. Do not try to prepare and inject DUPIXENT until you or your caregiver have been trained by your healthcare provider. Please see accompanying full Prescribing Information including Patient Information. INDICATION DUPIXENT is a prescription medicine used with other medicines for the maintenance treatment of chronic rhinosinusitis with nasal polyposis (CRSwNP) in adults whose disease is not controlled. It is not known if DUPIXENT is safe and effective in children with chronic rhinosinusitis with nasal polyposis under 18 years of age. © 2022 Sanofi and Regeneron Pharmaceuticals, Inc. All Rights Reserved. DUPIXENT ® is a registered trademark of Sanofi Biotechnology. DUP.22.08.0118