association

When children are the caregivers

In 1998, the American Association of Caregiving Youth (AACY) was founded to help support a silent, vulnerable and hidden population in the United States – the thousands of children who provide care for family members, but are unable to manage their own lives independently. And to show these strong children that they are not alone, the AACY created the Caregiving Youth Project (CYP) that integrates healthcare, education and a community of support. PatientsLikeMe is partnering with these two organizations to help shine a light on the lives of these caregiving youths. But who are some of these hidden heroes? Meet Katrina. She’s the oldest of three siblings, and growing up, she cared for her bedridden uncle, her sister (living with down syndrome and heart problems) and her brother (living with apraxia). But as she says, “this situation is a privilege because it is a challenge.” Read about her experiences in her own words below: Katrina’s story “Not many children grow up having a completely bed-ridden uncle living with them. Or a little sister with Down syndrome and severe heart complications. Or a little brother who could hardly hear as a young boy and who has Apraxia; but, those who do …

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You can make a difference in April

Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month? Listen to Leslie Chambers, the president and CEO of the American Parkinson’s Disease Association (APDA), explain the facts about PD in the video below: As she says, 60,000 people worldwide will be diagnosed with PD in 2015 – that averages out to 164 people every day, or one person every nine minutes. This April, it’s not just about the 12,5,000+ PatientsLikeMe members living with PD, or the 60,000 people who will be diagnosed in 2015 – it’s about everyone who is living and has ever lived with PD, and all their family, friends and colleagues who have been affected. You can make a difference. The APDA is running a “30 days, 30 ways” campaign all month long, so be sure to check their website daily to learn how to get involved. The Parkinson’s Disease Foundation is also participating in raising awareness, and they’ve created a great toolkit to get you started. And don’t forget to share …

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Are you at risk for diabetes? Take the test

Listen up: if you’re living in the United States, there’s about a 1 in 3 chance you’ll develop diabetes over the course of your lifetime. But there are many ways you can lower your risk, which is why the American Diabetes Association (ADA) has recognized March 24 as Diabetes ALERT! Day. Today is about raising awareness for not only those living with diabetes, but those who can still make lifestyle changes to avoid developing it. Diabetes is one of the most common health conditions in the United States – in 2012, over 29 million Americans (almost 10 percent of the U.S. population) had some form of diabetes (learn about types of diabetes here).1 It’s also estimated that in 2010, 86 million citizens aged 20 or older had prediabetes, which if left untreated, is likely to develop into type 2 diabetes in less than 10 years. Check out the infographic below for a quick snapshot of diabetes in the U.S., courtesy of the ADA and CDC. Today, take the ADA’s type 2 diabetes risk test and share it with your friends, family and colleagues. It only takes a few minutes to answer the multiple-choice questions – you never know what you or …

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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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Food for thought: Diabetes awareness edition

It’s American Diabetes Awareness Month, and the American Diabetes Association’s (ADA) theme for November is “America Gets Cooking to Stop Diabetes.” And in that spirit, we’re highlighting the diabetes community on PatientsLikeMe. Members have been sharing about pasta, low-carb diets and ideas for daily menus. Plus, one member graciously shared her personal recipes for some of her favorite dishes – read them in the infographics below. What’s the diabetes community sharing about? “Usually a meal of pasta and meat sauce in moderation a couple of times a month sopped up with toasted sourdough garlic bread (1 good slice) is usually enough to satisfy one’s pasta cravings. Provided you tow the line on everything else you eat you should recover from a pasta meal within 3 hours of eating it!” -Diabetic neuropathy member “I eat no starches. That is, no bread, no chips, no rice, no pizza, no potatoes, no tortillas. I severely restrict the amount of root vegetables I eat. Occasionally, I’ll have a little bit of beans. I eat very little fruit, maybe a slice or two of tomato on a burger or an occasional strawberry.” -Diabetes type 2 member “Instead of scrambled eggs, I make tofu scramble with …

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Recognizing diabetes in America

If you’re from the United States, chances are you know someone with diabetes – according to the American Diabetes Association (ADA), nearly 30 million Americans are living with diabetes, and many of them haven’t been diagnosed yet. That’s why November is American Diabetes Month. It’s all about raising awareness for both type 1 and 2 diabetes and educating everyone about risk factors, symptoms, healthier lifestyles and more. Diabetes affects different people in different ways. For those living with type 1, the body doesn’t make enough insulin. And for people diagnosed with type 2, the body cannot use insulin properly. Type 1 is typically diagnosed in children, teens and early adults, while type 2 can be developed at any age. Check out the CDC’s infographic on the left to get a snapshot of diabetes in the United States.1 Managing blood sugar is a part of living with diabetes, and to help foster awareness, the ADA has created a “America Gets Cooking to Stop Diabetes” campaign and designated each day of the week for a specific activity. It’s a great way to get involved – check out the factsheet here. If you’re sharing about American Diabetes Month on social media, add the …

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Jamie delivers keynote presentation at DIA 2014

Our co-founder, Jamie Heywood, recently traveled to San Diego to receive the Drug Information Association’s (DIA) 2014 President’s Award for Outstanding Achievement in World Health. With the award in his hand and speaking to everyone who was attending the event, he accepted it on behalf of the quarter million PatientsLikeMe members (this is for all of you!). During the DIA’s 50th annual meeting, Jamie gave the keynote address, and he touched upon his personal journey in the world of healthcare and patient-reported data. He spoke about his brother, Stephen Heywood, who passed away from ALS in 2006, and how Stephen inspired the creation of the ALS Therapy Development Institute (ALSTDI) and PatientsLikeMe. Jamie also shared about “healthspan” and the potential that personal health data has to change the way we look at treatments and research. But that’s not all – watch the video below to hear everything Jamie said. Share this post on Twitter and help spread the word.

Making fibromyalgia visible this May

The National Fibromyalgia and Chronic Pain Association (NfmCPA) is recognizing Fibromyalgia Awareness Month with an awesome theme – “C.A.R.E. & Make Fibromyalgia Visible.” C.A.R.E. stands for Contribute, Advocate, participate in Research, and Educate others about fibromyalgia, and that’s exactly what’s going on throughout May. Fibromyalgia (commonly shortened to “fibro”) causes widespread body pain or aching muscles – myalgia – that can be localized to specific areas called tender points. Other symptoms include tingling, numbness, fatigue and sleep disturbances.1 In most cases, fibromyalgia is limited to women, but men and children can also be affected – it’s estimated that 3% to 6% of the world’s population has the condition, and about 1 in 50 Americans are living with fibro at any given time.2 3 So how can you help raise awareness for fibromyalgia in May? Participate in the NfmCPA’s Fibromyalgia Awareness Day on May 12 Find a Fibromyalgia Awareness Month event in your home state Share your personal pledge to care about fibromyalgia Read PatientsLikeMe fibro member DarkAuburn’s blog interview and get the patient perspective The fibro community on PatientsLikeMe is one of the largest on the site, and it’s growing by the day – this time last year, there were about 30,000 in the …

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