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Going global for World MS Day

It’s World MS Day and this year we checked in with the global MS community to see how members around the world are living with MS. Here’s what they had to say:     “MS is very rare in India. I’m from North India, known as Kashmir, a very beautiful place and it’s rightly known as paradise on earth. For me living with MS is like dying every second in my crippled life. Imbalanced walk in MS really sucks. Shaking of arms or very poor pen grip in my hands makes me feel pity on myself. I don’t think that staying positive works. I had to leave my engineering studies and a government job because of it. Unfortunately, I can’t let others feel what I or my body feels for myself. I can’t afford the life-long treatment for an incurable disease like MS as I’m an idle cripple.”   “I am 50 years old and live alone with severely advanced SPMS. While my MS has progressed very quickly, since I have accepted I need care 22 months ago, the government has been EXTREMELY slow to catch on how desperately in need of care I am. I have [had] to fund most …

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How does ALS make you feel #InThreeWords?

May is ALS awareness month and this year, we’re joining the ALS Therapy Development Institute to share how ALS makes us feel, #InThreeWords. Sad, determined, frustrating as hell – just a few of the words PatientsLikeMe staff chose. Want to get involved? Check out what PatientsLikeMe staff had to say, including a video from our co-founder, Jamie Heywood.       And, check out 2016-2017 Team of Advisor member Cris’ three words: What are ALS members saying in the forum?    “Enraged, alone, afraid” – Kzueger  “Uninvolved, sorrowful, useless” – mbond0623 “Frustrated, compassionate, claustrophobic.” – jimig “Frustrated that I can’t stop this disease, overwhelmed at times by the losses created by ALS and grateful for kindness of others” – bountiful “Helpless, angry, pissed off.” – MsJLB   Let’s spread the word and end ALS together.   Share this post on Twitter and help spread the word.

Meeting PF patients where they are

Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences. “I am very passionate about honoring the precious gift provided by my donor family and in living a life worthy of their generosity.” John received a bilateral lung transplant on January 1st, 2015, and believes he’s alive today thanks to his donor family and care team at UT Southwestern in Dallas. Now, he’s committed to raising awareness for the needs of the pulmonary fibrosis community. Life after transplant John’s life before transplant included the use of supplemental oxygen 24 hours a day, and what he calls, “an eminent expiration date” in his near future. He couldn’t visit family in Colorado or the higher elevations of New Mexico due to the altitude, and every breath was a struggle. “The biggest thing about life after lung transplant is that I no longer have a firm expiration date, I can have hope. I can go to Colorado and …

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#NotAlone Recap: On PatientsLikeMe, no one is alone…

As our #NotAlone campaign wraps up, we hope you’ve been encouraged by the thoughts and personal stories of how other members have felt less alone by learning, connecting and tracking on the site. We recently had a look at all the member posts in the #NotAlone forum and wanted to share some highlights with you!  “I feel less alone coming here; it also helps me keep track of things in a way I never could before … It helps to know others truly understand, as someone who hasn’t ‘walked in our shoes’ cannot fully understand.” – member living with MS “…we all belong to a group where we have many similar experiences, where physical chronic pain seems to be one of the overwhelmingly major characteristics of what we all experience. That bonds us together as nothing else can. It does make me feel like I’m not alone, that none of us are alone as long as we have each other.” – member living with Fibromyalgia “I have learned more here than I ever imagined possible and I have made friends. Good quality friends that really understand. I have shared with them and they have shared with me … I have …

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#NotAlone: On PatientsLikeMe, no one is alone

Our co-founder Jamie Heywood calls it “the big idea my brother inspired.” A community of people learning from each other’s shared health experiences, connecting with people who get what they’re going through, and tracking their journeys to inform new research and help others understand what might work best for them. That is PatientsLikeMe, and that is what Stephen Heywood inspired. Today, more than 350,000 members are part of the community, and through learning, connecting and tracking, they are #NotAlone. Over the next few weeks, we’re launching the #NotAlone campaign that’s all about how members continue to learn from and support one another through life-changing conditions. What can you expect to see from #NotAlone? We’ll be featuring some inspirational stories to show how members have felt less alone on their journeys. Here’s a preview into the #NotAlone experiences of Letitia, Nola, and Geof: After Letitia learned about an epileptologist on the site and discovered she was a perfect candidate for surgery, she’s been seizure free for 3 years. When Nola’s multiple sclerosis kept her from accessing her shower, Gary, a member she connected with in the forum, stepped in to help from 3,000 miles away. Geof uses Adderall to combat multiple …

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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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Results From PatientsLikeMe Survey Highlight Patient Beliefs About Medical Marijuana

Cambridge, MA, July 14, 2015—A new survey of 219 PatientsLikeMe members has found that patients with certain conditions who use medical marijuana believe it is the best available treatment for them, with fewer side effects than other options and few risks. The survey, conducted in June 2015, is among the first to gauge patient perceptions about the benefits and risks of medical marijuana and their level of willingness to recommend its use. PatientsLikeMe’s Vice President for Advocacy, Policy, and Patient Safety, Sally Okun, RN said that while the number of respondents and conditions represented is limited, the survey and its results come at an important time. “As more people consider using medical marijuana, and more states legalize it, patients need to know what others are experiencing. This survey starts to gather real world data about marijuana as medicine—information that may be useful for patients and their physicians as they explore options and make treatment decisions.” Half of the survey respondents started using medical marijuana in the last five years, while 25% started to do so in the last two years. Smoking (71%), edibles (55%), and vaporizing (49%) were the most commonly used methods for taking the treatment. The top three …

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Throwback Thursday: Are you sleeping?

It’s time for another Throwback Thursday, and today, we’re rewinding back to the summer of 2013, when the staff at PatientsLikeMe shared about how they sleep. Sixty one employees helped kick off the “Are you sleeping?” campaign in a quick poll, answering questions about how long and how well they sleep each night. Check out the highlights below: How well are you sleeping? All in all, we found that the majority (89%) of our staffers were sleeping OK or better.   On average, how much sleep do you get every night? Although our Zzzz’s were OK, 61% of respondents were only getting between 5-7 hours a night (and according the Center for Disease Control and Prevention, that’s way less than the recommended 7-8 hours for adults).   Do you have a problem… For those who confessed to having sleep troubles, more people said it’s staying asleep that was the issue (77%).   What have you tried to help you fall asleep? When it came to needing sleep aids to catch Zzzz’s, more of our employees turned to solutions like books (60%), lifestyle changes (50%), TV (31%), relaxation (31%) and sex (33%). Some tried over-the-counter interventions (22%), prescriptions (16%) and homeopathic techniques (14%). …

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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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Getting to know our Team of Advisors – Kitty

Kitty represents the mental health community on the PatientsLikeMe Team of Advisors, and she’s always ready to extend a helping hand. She’s a social worker who specializes in working with children in foster care, and below, she shares how her own journey with major depressive disorder (MDD) has helped her truly connect with and understand the needs of both her patients and others. About Kitty (aka jackdzone): Kitty has a master’s degree in marriage, family and child therapy and has worked extensively with abused, neglected and abandoned children in foster care as a social worker. She joined PatientsLikeMe and was thrilled to find people with the same condition who truly understand what she’s going through. She lost her job as a result of her MDD, which was a difficult time for her. Kitty is very attuned to the barriers those with mental health conditions might face, and has great perspective about how to be precise with language to help people feel safe and not trigger any bad feelings. Kitty is passionate about research being conducted with the patient’s well-being at the forefront, and believes patient centeredness means talking with patients from the very beginning by conducting patient surveys and finding …

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