7 posts tagged “american”

When children are the caregivers

Posted July 13th, 2015 by

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 have a unique privilege. Why, you might ask, do I use the word privilege? Doesn’t the word “problem” or “difficulty” or “burden” describe the situation better? No. This situation is a privilege because it is a challenge. And it is in and through challenges that one may grow. Because my family has had these challenges, we have increased in love for one another and have been unified into a solid family. My parents have made enormous self-denying concessions to do what is best for their extended and immediate family in caring for those with physical and mental needs. 

As a child, my parents encouraged me and my siblings to help our uncle with simple needs, and we loved it when we were able to help. When my little sister was born, I was so proud and excited to be able to help care for her; it made no difference to me that she had Down syndrome–she was my sister. My mom was and is very disciplined with her time and responsibilities and taught me do the same. The importance of diligence and staying focused on the task at hand was important in general, but also because we never knew what might come up. My uncle, at that time, needed help almost every two minutes, and understanding my little brother was sometimes very difficult because he couldn’t communicate well with words.

I am thankful for my parents’ example of self-denial, discipline, and hard work, and I was able to carry those qualities, though probably not quite as well, into high school and apply them when doing homework, training for basketball, and leading the honor society. I am also thankful for their example of and passing on of a positive attitude; devoting time and energy to our family members and others is not a bothersome burden but a joy when looked at with proper perspective. Yet with the demands of household responsibilities, it was often hard to stay balanced getting my homework done while finding time to help my uncle and still be patient with my little sister too. But I made it through and finished on top and now feel somewhat prepared for the challenges ahead. And not only have these situations made me stronger and more mature as a person, but they enable me to help and sincerely empathize with those in similar situations.”

You can learn more about the AACY and the CYP by visiting their websites.

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You can make a difference in April

Posted April 3rd, 2015 by

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 through the #PDawareness or #Parkinsons hashtags.

If you’ve been diagnosed with PD, join 12,500 others in sharing to live better, together.

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Are you at risk for diabetes? Take the test

Posted March 24th, 2015 by

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 someone else might discover from the results. And don’t forget to highlight your participation on social media through the #DiabetesAlert hashtag.

Many PatientsLikeMe members are living with diabetes – in fact, over 16,000 with type 2 and over 2,000 with type 1. If you’ve been diagnosed, join and share your experiences with the community.

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1 http://www.diabetes.org/diabetes-basics/statistics/


Food for thought: Diabetes awareness edition

Posted November 26th, 2014 by

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 veggies almost every weekend. Instead of store-bought cookies, I make my own gluten-free vegan version that not a single picky eater has been able to tell the difference. Instead of regular, white, flour scones, I make vegan teff-based scones with mixed berries.
Diabetes type 1 member

 

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And don’t forget to check out our other Food for Thought posts if you missed them.


Raising awareness on Veteran’s Day

Posted November 11th, 2014 by

Right now, there are almost 22 million American veterans living in the United States, and every one of them has a story to tell. So today, we’re honoring their service by raising awareness for life after the military.

Like many others who are living with chronic conditions, the injuries our military men and women sustain are not always visible. Thousands of veterans are affected by post-traumatic stress disorder (PTSD), 30,000 have been diagnosed with a traumatic brain injury (TBI) since 2000 and many others are living with depression. Sometimes their symptoms don’t even manifest until many years after their service.

These eye-opening statistics are why we’ve recently announced a new multi-year collaboration with One Mind to help the millions of people worldwide who are experiencing post-traumatic stress traumatic brain injury, or both. We’ll work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

If you’re looking to learn more about US veterans, head to your nearest book store and grab a copy of “For Love of Country,” Howard Schultz’s and Rajiv Chandrasekaran’s new book (just released on November 4). Check out the video synopsis below:

 

There’s also the Concert for Valor today – it’s a free live event that is being organized on the National Mall in Washington, D.C. for veteran’s awareness. If you can’t make it in person, tune in on iHeartRADIO.

If you’re a veteran living with PTS or TBI, you can find others and connect to people who understand what you’re going through on PatientsLikeMe. There are more than 4,000 of members in the Veterans Forum, and every day, veterans are learning more about their health and the best ways to cope. Share a bond, and live better, together.

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Recognizing diabetes in America

Posted November 7th, 2014 by

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 #StopDiabetes and #AmericaGetsCooking hashtags. And if you’ve been recently diagnosed, visit the type 1 and type 2 diabetes communities on PatientsLikeMe – more than 17,000 people are sharing their experiences in the forum.

 

 

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1 http://www.diabetes.org/diabetes-basics/statistics/cdc-infographic.html


Ovarian cancer – taking early action

Posted September 26th, 2014 by

Do you know why teal is the official color for Ovarian Cancer Awareness Month? It’s an acronym for Take Early Action and Live. This September, we can all do our part to help people understand what it’s like to live with this condition, including spreading awareness and education for early signs and symptoms.

In 2014, the American Cancer Society (ACS) predicts over 20,000 women will be diagnosed, and more than 14,000 others already living with ovarian cancer will die from complications. Here are the straight facts about ovarian cancer from the ACS:

  • 1 in every 73 women will be diagnosed with ovarian cancer at some point in their lives.
  • Ovarian cancer ranks 5th in cancer deaths among women.
  • The lifetime chance of passing away from ovarian cancer is 1 in 100.

If you’re in the area, you can attend one of the National Ovarian Cancer Coalition’s (NOCC) many events this autumn, and you can also share the TEAL poster on social media. And if you’re living with ovarian cancer, you can also connect with other women like you in the PatientsLikeMe community.

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