PatientsLikeMe

Top Rheumatoid Blogs of 2016

Conditions, Patient Experiences / By

Today is Rheumatoid Awareness Day and this year we wanted to share some of the top rheumatoid arthritis blogs that were included in Healthline’s 16 Best Rheumatoid Arthritis Blogs of 2016 list: Itis Stay up-to-date to learn about RA’s long-term effects and practical tips for living with RA. This blogger’s socks help treat the pain of RA and of Raynaud’s, (an autoimmune blood vessel dysfunction that sometimes co-occurs with RA). 2. All Flared Up This blog is about “living rather than wallowing” with RA. Check in to see how blogger Amanda is learning to understand her body and how it works with RA. 3. Arthritic Chick Before Arthritic Chick was finally diagnosed with RA, she suffered with pain in her hands, feet and ribs for years. On her blog, she shares the good days, and her bad days with openness, honesty and strength. 4. An Attitude of Gratitude Julie Faulds’ easygoing blog gives us a peek into her life with her family, thunder-phobic dog — and, her RA and fibromyalgia. Julie chooses an “attitude of gratitude” and her bad days make her good days better and brighter. Always an advocate of finding the positive, she suggests thinking of your RA downtime as a …

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A PatientsLikeMe researcher’s take on the opioid crisis and new prescribing regulations

3 Comments / Patient Experiences / By

Meet Emily (EmilyMcNaughton), a PatientsLikeMe researcher with more than ten years of experience in both the private and public sector. She’s here to weigh in on the recent Boston Globe article addressing the aftermath of the opioid crisis. New prescribing regulations have some doctors hesitant to prescribe these drugs, but that could prove more harmful to the patients who rely on them for pain control. Check out the Boston Globe article, and see what Emily has to say below.   A researcher’s perspective Prescription opioid medications have been widely discussed over the past 15 years, especially with the surge of prescriptions dispensed during the 2000s, which created an epidemic of abuse and overdose-related deaths. Because the prescription-opioid landscape seems to be constantly changing, people all across the medical, public health, regulatory and pharmaceutical sectors have been working to find solutions that will still allow patients to access their prescribed pain medications while minimizing problems with abuse, misuse, death, and product diversion (when patients either share, give or sell their prescription medications, or medications are stolen). Many would agree that it’s been helpful to increase awareness, education and open communication between doctors and patients about these medications, but some aspects of restricting …

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Thyroid Awareness Month

Conditions, Patient Experiences / By

January is Thyroid Awareness Month. Why do we need awareness? An estimated 15 million Americans have undiagnosed thyroid problems. Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly. Who has HYPOthyroidism on PatientsLikeMe? 6,920 patients have this condition 30 new patients joined this month 1,271 say hypothyroidism is their primary condition Who has HYPERthyroidism on PatientsLikeMe? 518 patients have this condition 3 new patients joined this month 166 say hyperthyroidism is their primary condition A simple self-exam to “check your neck” could help with early detection or help you find lumps or enlargements in the neck that may point to a thyroid condition. Think you might have a thyroid problem? Here’s how to perform a neck check at home – all you need is a handheld mirror and a glass of water: What’s one thing you’d like others to know about living with a thyroid condition? Comment here or head to the forum to join the conversation.   Share this post on Twitter and help spread the word.

Meet Cris from the PatientsLikeMe Team of Advisors

8 Comments / ALS, Conditions, Patient Experiences / By

Say hello to Cris (@Criss02), another member of the 2016-2017 Team of Advisors. Cris is a proud grandparent and a vocal advocate for the ALS community. She sat down with us and opened up about what it’s really like to live with her condition. Cris recently presented at the ALS Advocacy conference in Washington D.C., and she chatted with us about why raising her voice is so important: “Without our voices things would remain the status quo.” What gives you the greatest joy and puts a smile on your face? Family. Just waking up in the morning. Thankful my son and his wife have taken us in so we’re not alone on this journey. So proud of him as a dad, teacher/coach! Seeing my teenage grandson each day with his silly sense of humor, loving kindness and our talks about his day as he lays on my bed. Seeing my granddaughter every day and proud of the woman and mother she has become – we watch our great granddaughter for her while she works. I can’t hold her but I can feed her on my lap and talk and be silly with her, my husband has diaper duty! Such a …

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Checking in with member Bev – “Laughter and comedy are still a huge part of my health management.”

1 Comment / Conditions, Parkinson's Disease, Patient Experiences / By

Remember Bev (YumaBev), who we met back in 2012, after she’d just had deep brain stimulation (DBS) surgery? She told us about her blog Parkinson’s Humor and a book of stories from her blog, Parkinson’s Humor: Funny Stories about My Life with Parkinson’s. Well we recently caught up with her again to see how things have been going since we last spoke. Check out the latest with Bev to see what she had to say about being an eternal optimist, connecting with other “Parkies” and the power of laughter. It’s been a while (4 years) since we last caught up! How have things been going? The last time we spoke, I had just had the first part of my DBS surgery. The surgery was an eventual success, but I had some minor complications. The skin on my scalp was so thin, it pulled apart where it was sutured. There was never any infection, but it did require several surgeries and a plastic surgeon to finally get my scalp to stay closed and heal properly. Right in the middle of all these scalp surgeries, I was diagnosed with breast cancer and the tumor was just below my DBS generator, so that …

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Patients at work: Member Nancy on being her own boss

Bipolar disorder, Conditions, Patient Experiences / By

We recently launched a blog series about patients who’ve started (or are gearing up to launch) their own businesses, sparking a discussion around how to manage your health without giving up on your career goals. Say hello to Nancy (@spicerna), who sat down with us to discuss how she finds a balance between living with bipolar I and expressing her creative side through her art. Nancy chatted with us about the kinds of projects she likes to work on, and why it’s important for her to be her own boss: “I need a job where I am the boss every day. There is an unpredictable nature about the illness…not a day that goes by to where I am not making judgment calls to maintain my health.” Can you tell us a little about yourself and your diagnosis experience? I have struggled with symptoms of Bipolar I, since I can remember. I really noticed the ups and downs in the teen years. And at age 16, I had my first psychotic break, (1 out of 5 breaks in my life.) I have always been an overachiever and had big dreams and goals for the future but the combination of everything that …

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Another successful 24 Days of Giving!

Conditions, Patient Experiences / By

That’s right – thanks to your awesome rallying, we reached our 24 Days of Giving goal again! Together, the PatientsLikeMe community donated a total of 428,459 health data points. We’ll be making a $25,000 donation to Make-A- Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children. What did the community donate? Check out this graphic for a by-the-numbers view.     Share this post on Twitter and help spread the word.

PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award

ALS / By

DUBLIN—December 8, 2016—A decade after their work sparked a revolution in patient empowerment and patient-centered medicine, PatientsLikeMe co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations. Inaugurated in 2000, the Humanitarian Award recognizes and encourages contributions to the fight against Amyotrophic Lateral Sclerosis/Motor Neurone Disease (ALS/MND) and is awarded to those whose work is of international significance for people affected by ALS/MND. In presenting the award, the Alliance’s citation acknowledged the founding of both the patient network PatientsLikeMe and the ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company. “When their brother was diagnosed with ALS at the age of 29, James Allen Heywood and Benjamin Heywood were devastated at his prognosis and at the lack of effective treatments for the disease. They saw firsthand how isolating ALS/MND can be. They took up these challenges as a family and, with family and friends, founded two organizations: ALS TDI, tasked with finding effective treatments for the condition, and PatientsLikeMe, to tackle social isolation and to collect data on what other drugs, interventions or supplements might make a difference to those with ALS/MND.” Jamie Heywood thanked the association on behalf of his family and PatientsLikeMe …

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PatientsLikeMe Kicks off 3rd Annual “24 Days of Giving”

Patient Experiences / By

People Living With Chronic Conditions Encouraged to Donate Health Data for 24 Days November 29, 2016 – CAMBRIDGE, Mass. – Beginning today on #GivingTuesday, PatientsLikeMe is kicking off its third-annual #24DaysofGiving to celebrate “the tradition of generosity.” Over the next 24 days, PatientsLikeMe is asking members to rally together, rethink what it means to give back and donate their health data on PatientsLikeMe.com after donating to their favorite charity or nonprofit. PatientsLikeMe is giving back, as well. During 24 Days of Giving, the company will once again showcase important research that has benefited from patient data in the last year. For every piece of health data shared during 24 Days of Giving, PatientsLikeMe will  make a donation to Make-A-Wish® Massachusetts and Rhode Island, up to $25,000, to help fund life-affirming wishes for seriously ill children. Since it first launched in 2014, PatientsLikeMe members have donated nearly one million data points about their health during 24 Days of Giving, including 60,000 treatment reports, 218,000 symptom reports and 269,000 health outcomes reports. As a result, over the last two years, a total of $40,000 has been donated to Make-A-Wish Massachusetts and Rhode Island. Through these donations, four wishes have been granted to children …

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PatientsLikeMe Adds Patient Reviews of Medications to Walgreens.com

Patient Experiences / By

Real-World Reports on Use, Effectiveness and Alternative Medications Now Available for Thousands of Brand Name and Generic Drugs CAMBRIDGE, MA., November 17, 2016—PatientsLikeMe has expanded the scope of patient-reported information it offers through Walgreens.com to help more people better understand how certain prescription medications may affect them. The new information, which is updated daily and comes from aggregated reports by PatientsLikeMe members, highlights the reasons why patients use specific prescription drugs and how effective they think they are. Also included are lists of the top five medication alternatives patients have tried for the same condition, as well as links to more extensive reports about dosage, duration, adherence and burden for more than 5,000 medications. PatientsLikeMe is a free network where anyone living with a chronic condition can track and share symptom and treatment experiences, connect with others and contribute data for research. The website has helped more than 400,000 people learn from each other about how to improve outcomes. Walgreens is the first pharmacy to provide PatientsLikeMe reports about medications on its website. The offering is an expansion of the collaboration between the two companies formed in 2015, when PatientsLikeMe first offered its patient-reported information on medications’ side effects and …

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