15 posts tagged “type 2 diabetes”

“I have been empowered to face the challenges of my condition” – Member Deb shares her journey with type 2 diabetes

Posted October 20th, 2016 by

Meet Deb (optimisticrealist), a self-described optimist who found no challenge too daunting, exercised daily and maintained a healthy diet. We recently caught up with her and she told us how her type 2 diabetes diagnosis changed the way she thought about what it meant to be healthy.

Learn more about Deb’s story and what she had to say about empowering herself through education, finding veganism and learning to live with her new normal.

Tell us a little bit about who you are. What was life like before your diagnosis?

I have always been an optimist, nicknamed Pollyanna for my focus on the bright side. I had the sincere belief that with creativity and perseverance there was no challenge that I could not surmount. If all else failed, I could reframe the situation to find the positive.

How has life changed since your diagnosis?

Having had none of the classic symptoms, my diagnosis of type 2 diabetes completely blindsided me and caused me to wonder if optimism was just another word for denial.

I was diagnosed while in the hospital and sent home with prescriptions but no instructions about how to live with my new reality. I will never forget standing at the pharmacy counter at 10 pm on the day I was discharged, exhausted and confused, getting a crash course in how to use my glucometer and lantus.

For the first weeks, I slept with the lights on as if somehow that would protect me from…what? I awoke each morning thankful for having awakened but my second thought was that there was another deer-in-the-headlights day ahead.

I couldn’t live like that, didn’t want to live if that was to be my life. I had believed myself a healthy person, exercised almost daily and had a physical job, ate no junk — yet here I was with a serious, chronic, progressive condition. I struggled with self-blame and regret and became depressed. I knew that the only course for me was to take charge of the situation, and that meant learning everything I could about diabetes management.

I spent every free moment online and I began to have hope that I could improve my condition or at least delay its progress and avoid complications. The greatest revelation was reading about veganism and diabetes. I found a registered dietician who is also a certified diabetes educator and herself a vegan. I was already vegetarian for many years so I decided to give it a try. It has changed my life, and my diabetes, for the better, in a number of ways.

Within two weeks of my last bite of animal food, I was off all insulin completely. After a lifetime of struggling with my weight, the pounds came off at the rate of about 1.5 pounds/week — effortlessly. As I approach the two-year anniversary of my diagnosis, I have had three consecutive a1c tests under 6%, test my blood glucose only once every other day, and never count a carb! I have been able to lower my blood pressure and have maintained my weight loss for over a year.

In the forums you talk about the importance of maintaining an exercise routine. What motivates you?  

I am a lifelong exerciser, but due to extreme fatigue I was unable to work out for months. After many tests to rule out other causes, my doctor was persuaded that the drug side effects were the culprit. I couldn’t wait to get back to the gym! But it has been a long and winding road to regain lost strength and endurance. I am motivated to keep at it because I know that both my blood pressure and blood sugar are dramatically improved, and I even break a sweat some days! I have not missed a day in about 6 months…some days are easier than others but my mantra is “do what you can when you can.”

In your profile you mention struggling to come to terms with your condition and the way you thought about your health. What advice can you offer others who may be going through the same thing?

My advice to others who are feeling overwhelmed by their diagnosis is education, education, education! An educated patient is an empowered patient. Learn everything you can from reliable, evidence-based sources, then teach your doctor. If your doctor is resistant to an educated, empowered patient, fire them and find a new one.

Has PatientsLikeMe has helped you manage your condition? What does it mean to you to donate your data?

PatientsLikeMe has been a tremendous resource for me in managing my condition. I have explored a number of online sites and it is by far the most comprehensive compendium of information about a wide array of conditions. I love being able to read about real patients’ REAL experiences with treatments, it is invaluable as a way of tracking my own data, and most of all, I find the forums a wonderful, welcoming, civil place to learn from and help others. PatientsLikeMe is as much a necessary part of my day as eating, sleeping and exercise!

I have been empowered to face the challenges of my condition by reading evidence-based research. Donating my data is a way of “paying it forward.”

 

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Meet Christel from the PatientsLikeMe Team of Advisors

Posted November 29th, 2015 by

We wanted to take a minute to introduce you to Christel, one of your 2015-2016 PatientsLikeMe Team of Advisors. Christel who was 12 years old when she was diagnosed with type 1 diabetes, shares openly that she spent a lot of her teens and twenties ignoring its existence.

But 32 years later, Christel has made peer support and advocacy her focus. She’s founded a psychosocial peer support conference for adults with diabetes (and caregivers, too) and co-founded an advocacy organization for easy and effective diabetes policy advocacy. Christel also writes a popular patient blog, ThePerfectD.com, and speaks publicly about her experiences.

In a recent interview (below) she talks about societal stigmas surrounding diabetes and how important it is to connect with others who share this condition.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Society thinks that diabetes is a punchline; something that shouldn’t be taken seriously.

We need to stop making fun of diabetes. All those pictures of desserts with the hashtag #diabetes? People with diabetes aren’t laughing. In fact, it only perpetuates the ignorance.

Those who are diagnosed often don’t get the proper education and care they need, and don’t talk about it, as the stigma surrounding diabetes due to misinformation prevents us, as a society, to address how to support people with this disease.

Until that changes, the increase of diabetes diagnoses will continue. The latest statistics show that 1 in 3 U.S. adults could have type 2 diabetes by 2050 if we don’t change our attitude and educate the public on what diabetes is, what it isn’t, and what can be done. (And the number of type 1 diabetes diagnoses are also increasing, although we don’t know why.)

What needs to happen? Education, compassion, and a willingness to speak up when someone makes a joke about diabetes.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

29 million Americans have a diabetes diagnosis (that’s 11% of the population!) and 86 million more have a pre-diabetes diagnosis, yet there is a lack of true awareness about what the disease is and the gravity of a diabetes diagnosis.

Type 2 diabetes is a metabolic disease. Individuals diagnosed have issues with the insulin they produce; not enough insulin or a resistance to the insulin they do have. People with Type 2 can manage their diabetes a number of ways: diet, exercise, oral medications, and insulin – or a combination of any of these.

Type 1 diabetes (which I have) is an autoimmune disease, and we comprise about 5% of the diabetes community. My body attacked the insulin producing cells in my pancreas, so I must inject insulin to manage my glucose levels. Without insulin, bluntly stated, I’m dead within a few days (if not sooner).

Even with insulin, I walk a fine line every day attempting to keep my blood glucose levels in range. Too much insulin in my body and the consequences can be immediate: mild impaired cognitive function to seizures, coma, or death. But too little? The consequences can be just as devastating: long-term complications and/or the poisoning of my body through ketoacidosis.

I’ve oversimplified these two main types (there are other types of diabetes!), but here’s what shouldn’t be oversimplified: insulin is not a cure, you cannot “reverse” or “cure” diabetes (you can maintain), you don’t get diabetes from being fat, you don’t get diabetes from eating too much sugar, and if you ignore your diabetes, the complications are deadly.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Grieve.

It’s perfectly acceptable to fall apart and mourn the life before your diagnosis – and your caregivers should do the same. You can ask: “Why me?” and shake your fist at the sky.

There will be plenty of time to be brave and courageous and inquisitive. Get the grief out of the way first. Don’t put it off or deny it as I did, years after my diagnosis, because grief is inevitable.

But don’t get stuck in your grief. Find others who can help and support you and guide you through your next steps in the journey.

How important has it been to you to find other people with your condition who understand what you’re going through?

Diabetes can be a lonely disease. For years after my diagnosis, I didn’t know another person with type 1 diabetes and wished that I could talk to someone about the daily challenges and the fears.

The Internet opened up my world and gave me confidantes, compatriots, and support from all over the world. Without the ability to get help online and share my thoughts and experiences, I truly believe that I would not be living well with diabetes today.

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World Diabetes Day: Act today to change tomorrow

Posted November 14th, 2015 by

Diabetes affects almost 400 million adults[1] around the world and contributes to nearly 5 million annual deaths[2]. November is American Diabetes Month, but on November 14, the entire world joins together to unite their voices against this disease on World Diabetes Day (WDD).

It was started back in 1991 by the International Diabetes Federation (IDF). And today, WWD is the world’s largest diabetes awareness campaign reaching a global audience of over 1 billion people in more than 160 countries. The campaign draws attention to relevant issues within the diabetes community and this year’s theme is “act today to change tomorrow,” with a focus on healthy eating habits and the importance of access to healthy, affordable food in reducing the global burden of the disease.

There are many ways to get involved – and stay involved year round – listed on the WDD site. How are you showing your support for those touched by diabetes this November, or in the months ahead? Share your awareness efforts and experience with diabetes in the PatientsLikeMe forum and connect with the almost 2,500 PatientsLikeMe members living with type 1 diabetes and nearly 18,000 members living with type 2 diabetes.

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“Focus on making small but meaningful changes” – an interview with Amy Campbell

Posted March 25th, 2015 by

Amy Campbell is a registered dietitian nutritionist and certified diabetes educator at Good Measures, a company that combines the expertise of dietitians with state-of-the-art technology to help people improve their eating and exercise habits. Before joining Good Measures, Amy worked for almost 20 years at Joslin Diabetes Center, an internationally recognized diabetes treatment, research and education institution.

Amy, you have an impressive background – former nutritionist at Joslin Diabetes Center and co-author of 16 Myths of a Diabetic Diet, just for starters. As a certified diabetes educator, you’re aware of the media buzz around the new cholesterol guidelines. What does this mean for people with type 2 diabetes – and those at risk for it?

Cholesterol guidelines have always been somewhat confusing. The Dietary Guidelines Advisory Committee, an expert panel that provides recommendations to the Department of Health and Human Services and the Department of Agriculture, has done their homework and really examined the evidence around dietary cholesterol. The good news is that, for the first time, the committee is really downplaying the role of dietary cholesterol. In other words, for most of the population, eating foods that contain cholesterol has little if any effect on blood cholesterol levels. This is great news!

Whether or not eating eggs affects our cholesterol levels is awfully fuzzy for many people. As both a dietitian and a health professional advisor for the Egg Nutrition Center, this probably comes up a lot. What’s the latest wisdom?

For many years, health professionals, including doctors and dietitians, advised their patients to limit or even avoid eggs due to their cholesterol content. But a number of important studies have shown that dietary cholesterol (cholesterol found in food) has little effect on blood cholesterol levels. In fact, the Dietary Guidelines Advisory Committee have dropped their recommendation that Americans limit their intake of cholesterol from foods, such as eggs and shrimp.

The data is a little less clear in terms of how dietary cholesterol might affect people who have type 2. But again, there’s no need to cut eggs out of a diabetes eating plan. In fact, if anything, eggs are a great addition because they are carbohydrate-free, rich in protein and low in saturated fat. Eggs provide many other important nutrients, as well, such as iron and vitamin D. Plus, they’re budget-friendly nutrients, as well.

Any specific suggestions for foods to eat or avoid if you want to reduce the level of “bad” (or lousy or LDL) cholesterol?

Although there’s some controversy surrounding saturated fat and how “evil” it really is, studies do show that this type of fat, found in red meat, cheese, whole milk and butter, for example, can raise LDL cholesterol levels. However, there are foods that can lower LDL cholesterol. These include foods high in soluble fiber, such as oatmeal, oat bran, beans, apples and pears. And foods rich in omega-3 fatty acids, like salmon, tuna, sardines, walnuts and flax seed can lower LDL levels as well.

Type 2 diabetes seems to be one of those conditions that’s closely related to lifestyle. Along with tips on nutrition, what else do your readers want in helping to manage their diabetes?

I’ve found that people who have type 2 diabetes want simple but straightforward suggestions on what they can do to live a healthy life with diabetes. Making changes to one’s eating plan can be difficult (we form our eating habits early on!), so practical pointers around food shopping, making nutritious meals and controlling portions are always helpful.

In addition, because getting and staying physically active is so important for people with diabetes, guidelines on how to fit activity into one’s daily life (like walking on your lunch break, for example, or using a resistance band while watching TV) are invaluable. Dealing with a chronic condition day in and day out can be stressful. Finding ways to reduce stress and to take time to relax is important. Finally, information is power. I encourage people who have diabetes to check their blood sugar levels – if not every day, at least a few times per week – to get a better understanding of how their food, activity and medications affect their diabetes control.

What about sleep? Have patients indicated that the condition seems to be associated with insomnia or sleep apnea?

Sleep is a big issue when it comes to diabetes. First, poorly controlled diabetes can keep a person from getting a good night’s sleep, especially if they’re getting up frequently to use the bathroom or get something to drink. Second, having type 2 diabetes increases the risk for sleep apnea, a serious condition whereby a person stops breathing for short periods of time while sleeping. And third, complications from diabetes, such as neuropathy, can also prevent a person from getting restful sleep.

Restless leg syndrome is another condition that interferes with sleep, and this condition is more common in people who have diabetes than in people who don’t. A lack of sleep can increase the risk of heart disease, obesity and even type 2 diabetes. Sleep deprivation can also do a number on your immune system, meaning that you’re more likely to get sick. Sleep experts recommend aiming for about 7 to 9 hours of sleep a night.

So, if you could come up with three top bits of advice for people who live with – or want to avoid – type 2 diabetes, what would they be?

Here’s my advice: First, focus on making small but meaningful changes to your eating plan (if you need to!). You don’t need to cut out carbs or go on some stringent diet. But aim to eat plenty of “whole” foods, including vegetables, fruits, whole grains and lean protein foods. Limit processed and fast food as much as possible.

Second, be active. If going to the gym isn’t for you, no worries. Go walking. Climb stairs. March in place when you watch television or talk on the phone. Physical activity is so important to help with blood sugar control. And third, take care of yourself. This means getting enough (but not too much) sleep, managing stress and making sure you have support from family, friends, co-workers or even an online community.

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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/


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


Results! PatientsLikeMe diabetes members share about challenges and concerns

Posted August 25th, 2014 by

Earlier this year, more than 450 PatientsLikeMe members from the type 1 and type 2 diabetes communities took part in a new survey from our partners at Kaiser Permanente Colorado’s Institute of Health Research. (Thank you all for adding your voices!) Members shared about everything from the day-to-day challenges of living with diabetes to the difficulties of communicating with their doctors.

 

This is real-world, patient reported health data doing good; helping others living with diabetes learn more from people just like them and showing researchers where to focus their efforts in the future. Click here to view the results.

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Food for thought: May edition

Posted May 30th, 2014 by

Just last month, we shared about some of our community members’ favorite foods, and about how what they choose to eat can impact the conditions they live with every day. We heard from the fibromyalgia, type 2 diabetes and multiple sclerosis communities – and to keep the series going, we’ve got three new hot, or cold if you like a good scoop of ice cream, forum threads to share. (If you follow our blog, that hot/cold play just made you smile… again. ☺)

ALS forum thread: tips on how to gain weight while eating healthy?

“… the bottom line is that I need to put on weight. I eat organic foods when possible, no sugar and a little if any wheat.”

“I rely on high calorie fruit (but all are good) such as bananas, mangoes, blueberries, etc. I just blend them up (using one fruit) to make smoothies.” 

“You might try using Ensure, Boost or other nutritional food extras.” 

Idiopathic pulmonary fibrosis forum thread: Primal blueprint

“The basic premise is that we should be eating like our pre-agricultural ancestors and eliminate grains and sugars from our diet. I need to lose weight to get on the transplant list…”

“And it becomes very surprising to find out how wheat is found in many unexpected products.”

“Men do demonstrate the ability to lose weight quicker and faster than women … although I prefer the word ‘program’ to ‘diet’” 

PatientsLikeMe forum thread: Nutrition questions anyone?

“Someone mentioned to me, and I am wondering if it is a concern to others, that the skin of fruit nowadays might have too many toxins from sprays, etc. … do others that eat non-organic worry about that?” 

“Juicing is a wonderful way to gulp down the 10-20 servings of raw fruits and vegetables that many are encouraged to intake.

“My intestines are very sensitive to fibre, I would have to build up the fibre content very slowly, or they would go straight through me …”

Jump into one of these forum threads or you can always start your own with a favorite recipe, general diet tips that have worked for you or a question you think the community can help answer.


Are you at risk? American Diabetes Association Alert Day

Posted March 25th, 2014 by

 

According to the American Diabetes Association (ADA), over 25 million people are living with type 2 diabetes in the United States, and 7 million aren’t even aware they have the condition. What’s more, 79 million people have prediabetes, a condition that can include several symptoms of diabetes.1

Do you know if you’re at risk for type 2 diabetes? Today is American Diabetes Association Alert Day, and it’s all about learning and recognizing risk factors. Take the ADA’s online diabetes risk test to learn if you’re at high risk – it’s fast, free and easy. The ADA’s official fact sheet is also full of useful information about diabetes and today’s activities, including Step Out walks and Alert Day Center education events. Visit the ADA’s website to find an event in your area.

Living with type 2 diabetes can involve many lifestyle changes, so if you’ve been diagnosed, are living with prediabetes or are at high risk, visit the PatientsLikeMe type 2 diabetes community to check in with your fellow patients and learn how they manage their condition. You can post questions in the forum and get answers from others living with diabetes, check treatment reports to see what people are taking to manage it, and track your own symptoms to get a better understanding of your own health.


1http://main.diabetes.org/dorg/alert-day/alert-day-2014-fact-sheet.pdf

 


Diabetes, behavioral changes and a surprise donation: An interview with Melinda Maryniuk, MEd, RD, CDE, FADA

Posted March 17th, 2014 by


Diabetes Alert Day is just around the corner, and to get a jump start on raising awareness for this chronic condition, we recently caught up with Melinda Maryniuk. She’s the Director of Clinical Education Programs for the Joslin Health Solutions division within Joslin Diabetes Center. Her areas of special interest include nutrition, patient education, behavior change, and increasing access to quality diabetes education services. (Check out her full bio at the end of this post.) Melinda spoke with us about how she got her start in diabetes education, what she wished more patients knew and her philosophy behind behavioral changes.

Can you tell us a little about how you became interested in dietetic education?

Growing up, I had always seen myself as a schoolteacher. But when it came to choosing a major in college, my dad pushed me to be some kind of scientist (I don’t remember why) even though I was not particularly interested (or good at) the subject! After changing majors multiple times (medical technology…biology…) and feeling completely without direction – my mom asked me a really important question. What do you like to do most? When I answered “eat” – she suggested I consider being a dietitian. Taking a nutrition class in college for the fun of it got me hooked. It was a perfect blend of science (which turns out I really did enjoy when it came to food chemistry) and teaching.

During my dietetic internship, where about a year is spent in a medical center before taking the exam to become a “registered dietitian” (RD), I quickly learned I was not comfortable working with sick patients in inpatient settings. I wanted to keep people OUT of the hospital. Once I started working in the field of diabetes education 35 years ago, I knew this was the right path for me. I never thought of people with diabetes as “sick” – but just having to be a little more intentional about making healthy food choices.

Looks like you’re also a believer in behavioral change. Can share what that means for the patients you work with?

We are all responsible for our day-to-day health care. We make hundreds of decisions each day that may affect our health. We choose to smoke or not smoke. Brush and floss our teeth. Choose healthy foods. Wear seat belts. Keep our weight in check. Be physically active. Have annual check-ups with our doctor. Take or not take the medicines (or vitamins or whatever) are prescribed to us. Much of what we do becomes automatic and we don’t even think about it. If you are generally “healthy” – you can make what might be considered poor choices without any immediate consequences.

When diagnosed with a chronic condition like diabetes, there are some behaviors that must be done (like taking insulin) in order to survive. There are some behaviors that should be done (like checking blood glucose) in order to reduce risks of serious problems. And there are some behaviors (like choosing healthy foods and being more active) that can lead to living a longer and healthier life. Thus, while adopting healthy behaviors is important for everyone, it is truly a matter of survival or at least greatly improved quality and length of life for people living with a health condition like diabetes.

When I first started out as a diabetes dietitian – I thought I had all the answers. I believed that if I could just tell people what to eat…they would stop eating the foods they loved that were not good for them and eat what I told them. I made up dozens and dozens of sample menus, lists of “dos and dont’s,” fancy handouts persuading people how to build-a-better-breakfast. I was recognized as a very creative and entertaining “teacher.” But while my “students” (patients) may have been “learning” something – they were not necessarily doing it.

So I changed my approach. I found that I became more effective when I followed the “ask-don’t-tell” philosophy of behavior change. Not telling the patient what to do…but asking them what they would like to do, how they think they can do it, how I could be of help and working with them to create reasonable action steps to actually do it. I believe for people to be successful in making changes in their behavior, they have to settle into an understanding of why that change is personally important for them to make. And then break it down into small steps. Having a healthcare provider, diabetes educator, coach or just a supportive family member or friend (even within an online community) can help see that intention to change – become a lasting behavior change.

I’ve long been a big fan of this quote (directed to doctors) from physician and philosopher, Albert Schweitzer, which also reflects this thinking: “Each patient carries his own doctor inside him. They come to us knowing this truth. We are at our best when we give the doctor who resides within each patient a chance to go to work.”

How do you see online communities like PatientsLikeMe contributing to patient education?

Online communities are a tremendous resource for people living with a wide variety of different health conditions. Research has shown you’re more likely to stick with the healthy behavior changes you make if you receive some kind of ongoing support. An online community is a perfect way to both offer and receive that kind of support. I love to see how these communities are growing to share ideas, tips, suggestions, practical advice and real-world experience. I think peer-to-peer support can be as valuable as reaching out to your healthcare team. That said, and while I’m very open to new therapies and sharing information, it’s still essential to have your primary care provider be part of your decision team for products and new paths you want to try.

There’s probably a lot you wish more people that are living with diabetes knew, but what would be your top three?

#1. Know Your Numbers. By that I mean, know the results of important lab tests and exams done for diabetes. Firstly, know what your A1C is, what it should be.. and if it is not where it needs to be, know what to do to get it there. Know what your blood pressure is…and what it should be. Other important lab test numbers to be aware of are your LDL cholesterol and a protein test to check kidney function. Have an annual dilated eye exam and make sure your feet are checked by your doctor to pick up any potential problems early. Being proactive in knowing your test results and making sure you and your healthcare team is taking action towards reaching target results helps you to live a long and healthy life with diabetes.

#2. If you’re not getting answers you understand, change up your healthcare team. If you feel frustrated with your physician, an important first step is to tell him or her what you’re looking for and how they could be more helpful. Sometimes people leave their doctor when what could have helped is just having the conversation of how to improve the relationship! Ideally, it is great to have more members on your healthcare team – like a diabetes nurse educator or dietitian – but that may not always be possible. However, you may be able to form a connection with a community pharmacist who is interested in diabetes that can also serve as a support and answer questions. Also, because diabetes CAN be hard…there may be times when it will be helpful talking with a professional psychologist or mental health counselor to help you navigate the stresses and challenges of living with a chronic disease. And surround yourself with people who are positive and supportive. Sometimes those closest to us don’t provide the support we need (or are misguided in how they are trying to “help”). Make sure you point out HOW they can be more helpful. And…this is a great place for online community support systems like PatientsLikeMe!

#3. Your diabetes treatment plan will change over time. Whether you have type 1 or type 2 diabetes, be prepared that the doses and types of medicine you take will change. That does not mean your doctor can’t figure out what is going on…or that your diabetes is getting “worse” – but your body can change and how it responds to different medicines can change. People with type 2 diabetes are often not prepared in their understanding that over time they will likely need to take insulin by injection. No matter what the medication regimen you follow, a healthy meal plan and regular program of physical activity is critical to helping the medicines work best. You need all three- diet, activity, medicines.

What do you wish patients knew that we haven’t asked you about?

Learning about diabetes is a lifelong process. You may have had it for quite some time and attended a class years ago. Know that there are always new things being learned. New discoveries. New medicines. New approaches to meal planning. Never stop learning and asking questions. Subscribe to a magazine like Diabetes Forecast (from the American Diabetes Association) or take annual diabetes refresher classes at your local diabetes education program. As Dr. Elliott P. Joslin, the founder of the Joslin Diabetes Center, said way back in 1934, “the diabetic who knows the most, lives the longest.”

And we just can’t pass up the opportunity to ask you about this one – Last October a donation was made by CheeseBoy in your name to the Greater Boston Food Bank. Can you share what that was all about? 

Ha! How did you hear about that?!? My sister picked up a flyer for a contest that Cheeseboy, a fast food chain was running in honor of their millionth grilled cheese sandwich being sold. She challenged everyone in our family to enter the contest – which was to write a (very) short essay stating to what group Cheeseboy should make a $10,000 donation – and why. I’d been thinking a lot about food insecurities and how (surprisingly) not having access to enough food in the poorer populations of our nation (and the world) is being increasingly linked with a higher risk of obesity and diabetes. It stands to reason. When a person has very little income the food that tends to be purchased tends to be low quality and high calorie (buying a super size soda can be cheaper than buying a bottle of water!) So, I wrote a 250 word essay to recommend a donation go to Feeding America – the nation’s leading domestic hunger relief charity. I didn’t realize at the time Cheeseboy is a Boston-based company so they asked if I minded for the donation to make an even bigger impact by giving it all to the Greater Boston Foodbank – that is part of the Feeding America network of charities. What a thrill it was to feel responsible for a donation of $10,000 to such an important organization that ultimately provides increased comfort and security for people who are at high risk for many health problems – including diabetes. And, as a bonus, I received a special card allowing me grilled cheese sandwiches for life! The ultimate in comfort foods!

About the PatientsLikeMe diabetes community

There are more than 14,000 PatientsLikeMe members currently living with diabetes, and many of them have been sharing their experiences and contributing to real-world research that could benefit their fellow diabetes patients. If you’re living with type 1 or type 2 diabetes, you can find others just like you on PatientsLikeMe. Track your own experience with a personal health profile, or share your story in the community forums to start living better together.

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More about Melinda Maryniuk, MEd, RD, CDE, FADA

As Director of Clinical Education Programs for the Joslin Health Solutions division within Joslin Diabetes Center Ms. Maryniuk oversees the clinical, educational and quality improvement activities for the 40 Joslin Affiliates and outreach programs. She also coordinates the education activities for the HealthCare Services Department, including several national diabetes education initiatives. Her areas of special interest include nutrition, patient education, behavior change, and increasing access to quality diabetes education services.

Ms Maryniuk has worked in the field of diabetes education for over 30 years and has lectured and published extensively for both patient and professional audiences around the country and internationally. She is active within the American Diabetes Association, having served on the Board of Directors, as chair of the Education Recognition Program Committee and is currently an Associate Editor for Clinical Diabetes. Within the American Dietetic Association, Ms. Maryniuk served as Chair of the Diabetes Care and Education Practice Group as well as Chair of the Division of Clinical Dietetics and Research of the Council on Practice. She is the recipient of the 2005 Outstanding Educator in Diabetes from the American Diabetes Association as well as the 2010 Medallion Award from the American Dietetic Association. She recently served as a Co-Chair for the task force to review and revise the National Standards for Diabetes Self-Management Education.

Melinda has a BS from the University of Tennessee-Knoxville and a MEd from Tufts University. She completed a dietetic internship at the Frances Stern Nutrition Center in Boston.


Diabetes and stress- What the PatientsLikeMe diabetes community has to say

Posted August 6th, 2013 by

Here at PatientsLikeMe, we believe that sharing healthcare experiences is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. So, we wanted to share back with everyone some results from a recent diabetes survey that nearly 600 PatientsLikeMe community members took part in. Our members entered their responses to the 17-item Diabetes Distress Scale (DDS), which measures the amount and types of problems diabetes can cause in a person’s life.

Have you had an A1C test done in the past year? 
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Download the PDF  to check out the results summary.

Dr. William Polonsky, Founder and President of the Behavioral Diabetes Institute, and the co-creator of the Diabetes Distress Scale, shared his thoughts about diabetes and stress with the PatientsLikeMe community.

“I believe it’s important to understand the physical, behavioral and emotional sides of illness. Diabetes, in particular, is so highly dependent on what people do every day.  It is, therefore, almost all about behavior− how do you talk yourself into taking on new tasks and making changes in your lifestyle, some of them which may seem not so pleasant or worthwhile, that you’d rather not do.”

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If you’re living with type 1 diabetes, or type 2 diabetes, find others just like you in our growing communities on PatientsLikeMe. Learn what others are doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.


American Diabetes Assocation Alert Day – Is Today Your Wake-Up Call?

Posted March 26th, 2013 by

Today, March 26, 2013, is American Diabetes Association Alert Day, so we are doing our part at PatientsLikeMe by putting out our own alert.  Are you at risk for type 2 diabetes?  Take the American Diabetes Association’s Diabetes Risk Test right now to find out now.

National Diabetes Alert Day 2

One in three adult Americans is estimated to have prediabetes – marked by high blood sugar levels – so don’t think it couldn’t happen to you.  Fortunately, lifestyle changes such as weight loss and increased physical activity can delay the onset of type 2 diabetes, or even prevent it altogether.

Not only will you find out your risk level by taking this free and fast test, but you’ll help raise money to fight the growing diabetes epidemic (26 million children and adults in the US).  Boar’s Head is donating $5 to the ADA for every person who takes the test between March 26th and April 9th – up to $50,000.

So take a moment and answer a few simple questions about your weight, age, family history and other potential risk factors.  You’ll be helping yourself potentially avoid a serious disease, and you’ll be helping others no matter what.  Take the test now.

National Diabetes Alert Day 1


Building a True Picture of Diabetes During American Diabetes Month

Posted November 5th, 2012 by

Get a Clearer Picture of Diabetes During American Diabetes Month This November

November is American Diabetes Month, and this year, the American Diabetes Association is working to reshape the understanding of diabetes.  The goal is to raise awareness of the fact that diabetes is life-changing disease with a huge societal impact – and not a minor hindrance, as some people think.

As part of this mission, the ADA is asking patients with type 1 diabetes and type 2 diabetes to send in a photo that captures what life with diabetes is like.  What are the everyday challenges and considerations?  Help the ADA build a mosaic of the “true picture of diabetes” and CVS will donate a $1 for every photo uploaded, up to $25,000.

Upload Your Photo of Life with Diabetes, and CVS Will Donate $1 for Each Photo.

Another way to get a clearer picture is to consider some of the alarming facts about diabetes, which is projected to affect as many as one in three Americans by 2050:

  • 26 million Americans are currently living with the disease
  • 79 million Americans have prediabetes, putting them at risk for type 2 diabetes
  • Two out of three people with diabetes die from heart attack or stroke
  • Diabetes is the leading cause of kidney failure and new cases of adult blindness
  • The cost of diabetes is $1 out of every $5 in total healthcare costs

If you are living with diabetes, or you’re at risk for developing it, connect with others like you at PatientsLikeMe.  There are more than 1,000 type 1 diabetes patients and more than 4,700 patients type 2 diabetes patients in our community who are sharing experiences with blood glucose controlsymptoms, treatments and more.

How do they evaluate common medications such as Metformin and Insulin Glargine?  How many have undergone a kidney transplant?  Who’s taking part in a diabetes-related clinical trial?  Exchange knowledge and support with those facing many of the same struggles as you.

A Snapshot of the Type 2 Diabetes Community at PatientsLikeMe

For an in-depth picture of a family affected by diabetes, check out our interview with kidney transplant recipient Michael Burke.


Act Now for World Diabetes Day

Posted November 14th, 2011 by

Today Is World Diabetes Day

Today is World Diabetes Day, sponsored by the International Diabetes Federation.  An official United Nations Day since 2007, World Diabetes Day is held every year on November 14th to commemorate the birthday of Frederick Banning.  Along with Charles Best, Banning is credited with the life-saving discovery of insulin in 1922.

Why is there a need for a global diabetes day?  As the United Nations wrote in their 2007 resolution, diabetes is “a chronic, debilitating and costly disease associated with major complications that pose severe risks for families, countries and the entire world.”  Namely, it is the cause of four million deaths worldwide every year, with someone dying every eight seconds from the disease.

The global symbol for diabetes awareness is a blue circle, and supporters everywhere are encouraged to wear blue today to help spread the word about this pandemic.  You can also help get the message out about prevention.  While type 1 diabetes cannot be prevented, research shows that, in many cases, type 2 diabetes can be prevented by maintaining a healthy weight and being physically active.  Regular walking for at least 30 minutes per day, for example, has been shown to reduce the risk of type 2 diabetes by 35-40%.

We recently highlighted type 1 diabetes (and how it differs from type 2) in our blog post, “American Diabetes Month Kicks Off with T1 Day,” as well as our two-part interview with type 1 patient Michael Burke.  Here’s a little more information about type 2 diabetes, which accounts for at least 90% of all diabetes cases worldwide.  At PatientsLikeMe, 1,773 patients report type 2 diabetes, with 68% of them female and 32% male.  One of the most commonly reported treatments is Metformin, an oral anti-diabetic medication prescribed when hyperglycemia (high blood sugar) due to diabetes cannot be controlled through exercise and diet alone.  What do patients say about this drug?  Check out the 125 treatment evaluations submitted by our members, who share their experiences with dosage, side effects, efficacy, cost and more.

Diabetes University Takes Place Every Year on World Diabetes Day in Atlanta, Georgia

With a staggering 366 million people diagnosed with diabetes worldwide – and another 300 million at risk – it’s imperative that diabetes awareness and knowledge grow faster than the disease itself.  The new “Calling All Types” diabetes awareness campaign – an initiative of PatientsLikeMe and our partner BBK Worldwide – helped mark World Diabetes Day this past weekend at the Diabetes University 2011 event in Atlanta, Georgia.  Now in its 18th year, this event works to educate both medical professionals and the public.  Given that the prevalence of diabetes in Atlanta is a full point higher than the national average, Calling All Types has made Atlanta the focal point of the campaign’s initial awareness-raising activities.

Are you a type 1 or type 2 diabetes patient?  Share your story at CallingAllTypes.com in honor of World Diabetes Day.  For everyone else, “act now” by wearing blue, talking about type 2 diabetes prevention or simply taking a walk around your neighborhood.