MS Awareness Month

MS and Pregnancy – From our Partners at MotherToBaby for MS Awareness Month”

It’s MS Awareness Month, and this year, we’re focusing on how the condition affects pregnant women and their babies. Our partners at MotherToBaby recently shared an article that answers some of the questions that might come up for women who have MS and are thinking about having children. Check it out below… MS: The Diagnosis That Doesn’t Mean Missing Out On Motherhood By Neda Ebrahimi , Teratogen Information Specialist, Motherisk As a counselor with Motherisk, the Canadian partner of MotherToBaby and a service of the Organization of Teratology Information Specialists (OTIS), I hear many stories from women about pregnancy. Some of those stories strike cords with me. Their urgency and desire to make the healthiest decisions possible for their future children is both understandable and admirable. In honor of National Multiple Sclerosis Awareness Month, I give you Nina’s story. Nina’s Story “I’m 31 years old, and I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS), when I was only 22. My first relapse was scary. I was writing my finals, and 2 days before my last final, I lost sight completely in one eye, and my legs felt so week and wobbly that I couldn’t stand even for a second. After going …

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Myths vs. facts about multiple sclerosis

Stop! What do you know about multiple sclerosis (MS)? That’s the question we’re asking during MS Awareness Month. We’ve heard from many community members that people don’t always get what it’s like to live with MS, and that there’s wrong information out there. So as part of ongoing awareness efforts, we created shareable photos that will hopefully dispel some of the myths surrounding the neurological condition. There are 13 shareable infographics in total – click here to view the gallery.  Don’t forget to use the #MSawareness hashtag when you post on your Facebook or Twitter. Let’s kick things into high gear and start dispelling myths about MS this month so that everyone is armed with better information all year round. What’s the community saying? “The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness” -MS forum thread “I have only been offended two times in 20 years by strangers. Family, now that’s a different story – stigma runs rampant there when it comes to MS.” -MS forum thread “A society that attaches a …

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March is Multiple Sclerosis Awareness Month

Multiple sclerosis (MS) affects more than 2.5 million people worldwide, and in the United States alone, about 200 new people are diagnosed each week. Those are just a couple of the many reasons why the Multiple Sclerosis Association of America (MSAA) recognizes March as Multiple Sclerosis Awareness Month. What more do we know about MS? Doctors are unsure of the root cause of the condition, but women are twice as likely as men to develop MS. Additionally, the farther away from the equator you live, the greater likelihood you’ll experience MS – overall, your lifetime chance of developing MS is about 1 in 1,000.1 Did you know that there are four different types of MS? Each one affects people a little differently. Relapsing-remitting MS (RRMS) affects the large majority (85 percent) of MS patients, and this type features clearly defined periods when symptoms get worse and activity decreases. Primary-progressive MS (PPMS) causes a clear progression of symptoms and equally affects men and women. Secondary-progressive (SPMS) is a form of PPMS which is initially diagnosed in only about 10 percent of patients. Progressive-relapsing MS (PRMS) is found in only 5 percent of MS patients, but these people have both clear relapses …

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Stand up and be counted during National Multiple Sclerosis Education and Awareness Month

  Here at PatientsLikeMe, every experience counts, whether you’ve just been diagnosed, are trying a new treatment, or managing your symptoms. This month, we’re standing up and focusing on Multiple Sclerosis (MS), a neurological condition that affects 2,500,000 people around the globe—including more than 400,000 in the United States.1 To help raise awareness about MS, the Multiple Sclerosis Foundation (MSF) and its partners have named March “National MS Education and Awareness Month.” Together, we can stand up and help those living with MS be counted. There are many different awareness activities you can participate in over the next few weeks. You can also submit a photo to the MSF as part of their “MS Awareness: Make It Count” contest. You’ll need three things: A camera (still or video) Lots of people wearing the color orange (here’s a picture of the PatientsLikeMe team) A homemade sign that says “SUPPORT THE MULTIPLE SCLEROSIS FOUNDATION – BECAUSE MS COUNTS!” If you’ve been recently diagnosed with MS, check out our MS patient interviews and blog posts. And you could also join more than 33,000 people with MS at PatientsLikeMe – it’s one of the largest communities on the site, and there are always some great …

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“We Keep Moving” with the National MS Society of Greater New England

Just on the heels of MS Awareness Month, here’s one more interview with one of PatientsLikeMe’s nonprofit partners.  For this interview, Molly Cotter, who handles Nonprofit Partnership Development at PatientsLikeMe, sits down with National MS Society of Greater New England’s Development Director Todd Krohne to discuss exciting things happening with his chapter, including their new “We Keep Moving” campaign.  The NMSS of Greater New England is helping spread the word about our site and the PatientsLikeMeInMotionTM program and we are happy to report that six of our 3-star patient members (to date) will have teams sponsored by PatientsLikeMe at MS Walks in the New England region this Spring. — (Molly) During MS Awareness Week last month, NMSS launched its “We Keep Moving” campaign to “catapult our movement toward a world free of MS.”  What’s that campaign all about and why is it important for patients? (Todd) Living with multiple sclerosis is a challenge, no matter where you are. Imagine what it’s like living with MS in an urban high rise — or in rural America where the closest MS specialist is 250 miles away, by bus. “We Keep Moving” is a website that will chronicle a ten week journey across …

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Celebrating MS Awareness Month:
Interview with Accelerated Cure’s Sara Loud

It’s MS Awareness Month and we’re excited to bring you information from our nonprofit partner, Accelerated Cure Project for MS.  We briefly mentioned the Accelerated Cure Repository in our blog interview with Devic’s patient, Gracie.  We thought we’d take the opportunity to ask The Accelerated Cure Project for MS a bit more about the repository and what it means for MS patients.  Here’s the interview between Molly Cotter (PatientsLikeMe nonprofit development) and Accelerated Cure’s Operations and Repository Director, Sara Loud. — (Molly) What is the Accelerated Cure Repository? Accelerated Cure Project, (www.acceleratedcure.org), is a research-focused national nonprofit whose mission it is to cure MS by determining its causes, triggers, and disease mechanisms.  Our main resource to accomplish this is our Repository, a collection of biological samples and data collected from people with MS and related demyelinating diseases.  We collect these samples and data at our 10 collection sites across the country and then distribute them to scientists, both academic and commercial.  The Repository is a critical resource to the research community.  We’ve taken on the burden (time, cost, complexity) of sample and data collection so that scientists can spend their time and money doing their most important work, the research. …

Celebrating MS Awareness Month:
Interview with Accelerated Cure’s Sara Loud
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Raising MS Awareness: Meet Ramilla…

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we interview members each month in our newsletter to find out more about how they approach life.  In honor of MS Awareness Month, we are pleased to share with you our recent interview with Ramilla, a three-star member of our MS community.  Here’s what Ramilla had to say… — (Amy) What keeps you motivated? (Ramilla) I keep motivated by focusing on the progress that I still make every day. Even on the hard days, when I don’t feel so well, I manage to take something from it that I feel good about, and those hard days make me appreciate the good days so much more. I am also motivated by the people I meet. I have met so many people over the years who have been affected by MS, and many more who don’t know anything about MS. I like that I can motivate the people I meet to be more active, both able bodied, and people with chronic conditions like MS. I imagine that by running the races I do, and talking to people about the benefits of a healthy and active lifestyle, …

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Multiple Sclerosis Awareness Week: Interview with Gardener

It’s National Multiple Sclerosis (MS) Awareness Week.  There are more than 17,400 patients in the PatientsLikeMe MS community sharing data about their symptoms, treatments and side effects, lifestyle modifications and overall health outcomes. In honor of the week, and March being National MS Awareness Month, we will be posting interviews with MS patients and nonprofit partners on the blog each week to help raise awareness about real-world experiences with the condition and initiatives that are keeping the research going.  Today, is our interview with gardener, one of our very active patient members who joined the community back in 2007 just after it launched.  She recently answered some questions from Amy Morton, a member of our marketing team here at PatientsLikeMe, about life, living with MS and being a member of PatientsLikeMe. — (Amy) What’s on your mind these days? (Gardener) Right now, at this moment, my cats, because they’re begging for food, and being very loud and persistent. In general, I’ve been focusing on violin and accordion performances coming up in April. I’m playing dance solos. It should be fun. That, and figuring out something to make as a demo for this month’s sewing group. I went over two years …

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