Riva is finally doing what she set out to do in high school – writing her observations of life and human behavior - little did she know then that diabetes would be her muse. Riva has had type 1 since 18 and is the author of “50 Diabetes Myths That Can Ruin Your Life: and the 50 Diabetes Truths That Can Save It” and “The ABCs Of Loving Yourself With Diabetes.” Read full bio

Turning Diabetes Over to the Bionic Pancreas

I considered titling this “Anna Floreen Was Diabetes-Free for 5 Days,” because she was and now she’s not. And I’m curious what that transition has been like — picking up your chronic illness again after you dropped it from your shoulders and walked off into the sunshine, so to speak.

April 4, 5, 6, 7 and 8, days I’m sure Anna Floreen will never forget, she was effectively “cured” of her Type 1 diabetes (T1D). Anna participated in the Massachusetts General Hospital Beacon-Hill study.

She was among approximately 30 T1D patients testing the performance of the “bionic pancreas” outside the hospital. She was, however, hooked up to an IV monitor overnight, restricted to a three-mile radius and had a nurse by her side at all times.

2013-04-18-ScreenShot20130418at1.42.50PM.png
Anna Floreen wearing the bionic pancreas

Anna’s had type 1 diabetes for 24 years, since she was 6 years old. Yet that early week in April, she didn’t. She didn’t have to figure out how many carbohydrates were in every morsel of food she ate and how much insulin she needed to take to cover it.

She didn’t have to guess if her workout at the gym or her walk to work would cause her blood sugar to go too low, and then wonder whether or not to go or prepare for possible low blood sugar.

She didn’t have to poke her finger 10 times a day to see her blood sugar number. That’s 50 pricks she didn’t have to feel. Or worry as she fell asleep that she might get a severe low blood sugar during the night and not wake up.

That is what makes T1D so relentless and dangerous. Throughout the day, every day, one has to think and act like a normal functioning pancreas, the organ that controls blood sugar. That is also what makes this study exciting and hopeful.

The Bionic Pancreas

The bionic pancreas consists of three pieces of hardware. There’s an iPhone with an app that contains the system’s control software and algorithm and a continuous glucose monitor (CGM).

The CGM’s sensor/transmitter, worn under the skin, streams glucose (blood sugar) data to two connected infusion pumps. One delivers insulin to lower blood sugar and one delivers glucagon to raise it. Based on glucose levels transmitted every five minutes from the CGM, the app determines and dispatches how much insulin or glucagon should be delivered to maintain ideal blood sugar levels.

If Anna’s blood sugar began to veer toward hypoglycemia (blood sugar below 70 mg/dl (3.8 mmol/l) — the dreaded side effect of insulin that can cause coma and even death — the pump containing glucagon released some to raise Anna’s blood sugar. If Anna’s blood sugar began rising too high, the insulin pump sent a precise amount of insulin into Anna’s blood stream to curb the rise and bring it back down into the normal range between 80 mg/dl (4.4 mmol/l) and 120 mg/dl (6.6 mmol/l).

The bionic pancreas and its algorithm are the genius of biomedical engineer Edward Damiano. Damiano is also the father of David, who got Type 1 diabetes at 11 months. That’s when he began working on an automated “closed loop” system that would regulate blood sugar and relieve patients of the daily decisions and actions they must now perform.

 

Anna’s Experience

Anna blogged each of the five days she wore the bionic pancreas sharing her experience with the thousands of visitors to the Type 1 diabetes online community, Glu. Anna works as Glu’s Community Outreach Manager, and I recommend you read her posts. You will see how far technology has taken us.

I interviewed Anna five days after her trial participation wanting to know a bit more about the emotions she’d expressed, and also what it is like to suddenly be disease-free and then ill again.

Anna wrote in her first post, “The best part so far has been the lack of worry, emotional guilt, and shame that accompany all of us too often when it comes to decision-making between me and my ‘external organ’ pump that I’ve had a solid relationship with for over a decade.”

Anna told me over the phone, “The 24/7 of diabetes eats away at your mental aptitude and spirit. I would wear 10 sites on my body if it meant I didn’t have to deal with the constant thinking, and the embarrassment, shame and guilt that accompanies diabetes each day. I stare at my CGM and base my self-worth on a trending number graph! How crappy is that, and people don’t get it.”

“During the trial I felt so free. My brain was free of decision-making and dreading the consequences of my decisions. No more thinking should I have taken the subway instead of walking to prevent that low? Should I not have had that extra chocolate kiss at the holiday party? The lack of worry was amazing.”

What most people don’t know about T1D is the emotional stress of all day trying to keep your blood sugar within a narrow, prescribed, acceptable band. Anna tells people it’s like stepping on a scale 24 hours a day. The moment before you do, you feel the shame and guilt of maybe discovering you gained weight. She said many people with Type 1 diabetes feel that 24 hours a day.

As for what it’s like to lay down your disease and pick it up again ,Anna indeed went through bionic pancreas withdrawal.

“For days I was angry at diabetes again,” Anna said. “I thought I would be much more motivated to take care of my diabetes, knowing the potential for it to be in phenomenal control. But it was like I was diagnosed all over again. I didn’t want to do anything.”

“During the trial everything was done for me,” said Anna. “So much so even the nurse asked me, ‘Do you want to prick your finger or do you want me to do it for you?’ You do it, I said. Imagine having someone prick your finger being a treat!”

The outpouring of support from the online diabetes community, having so many families and friends thank Anna for what she did and knowing she’s provided important data from the trial motivated Anna to take care of her diabetes again.

She’s also inspired by having experienced something she never thought she would, the day she didn’t have to worry about her diabetes. She hopes the trial inspires others to trust that research and technology arebringing us closer to a cure.

 

Defining the Cure

One of the last things Anna shared both surprised and didn’t surprise me. “I feel like I’ll always have diabetes even if there is a cure,” Anna said. “Just like during the first meal of the trial when I reached down to grab my pump and then realized it wasn’t there. Diabetes has been my life. My mindset, that diabetes perspective whatever it is, will never go away. Even if there is a cure, I don’t think I will ever feel mentally cured.”

Having lived with T1D for 41 years I feel the same. I also feel the same as Anna that I’ll be happy to give up the rest. The constant carbohydrate and insulin calculations, the running tape of what’s my blood sugar now, and questioning is it safe to simply go take a walk? 

It’s a brave thing Anna did. That everyone who participates in a clinical trial does. Not just risking that the device you’re testing may fail, but that it will succeed. That you will know freedom and then have to give it back.

Would you give up your diabetes, cancer, AIDS, Parkinson’s, rheumatoid arthritis only to have it back again after being free?

Damiano’s hope is that the bionic pancreas will be perfected and available by 2017, the year his son will be entering college. I’m sure there are about 3 million people who are now hoping right along with him.

 

Next Steps

Extensive testing of the bionic pancreas’ software-controlled system has already been done on diabetic pigs and in three successful in-hospital studies of adults and adolescents over the past 4.5 years.

The Food and Drug Administration has given Damiano and his research associates the green light to carry out the first of three longer-duration outpatient studies over the next 18 months. Participants will have less nursing supervision and greater freedom of movement.

Originally published in The Huffington Post.

4 comments

5 Healthiest and 5 Unhealthiest Packaged Foods (According to FoodFacts.com)

Cream powder, partially hydrogenated soybean oil (trans fat), “flavors,” saturated fats, sodium, controversial ingredients and added sugar. That was dinner for thousands, maybe millions, of babies and toddlers last night who ate Gerber Graduates Lil’ Meals Pasta Shells and Cheese.

Most of us know the healthiest foods are natural and unprocessed like fruits, vegetables, nuts, seeds and whole grains. Yet we spend a great deal of our nutrition equity chowing down on chemicals disguised as food. And unaware, feeding them to our children. 

So I was excited to find this user-friendly food rating website FoodFacts.com. FoodFacts can help you and your family eat more healthfully by knowing if a food has excessive sugar, fat, salt or harmful chemicals. 

2013-03-30-A.png
2013-03-30-F.png

FoodFacts.com reviews more than 100,000 popular packaged, non-packaged and fast foods and 20,000 ingredients. Each product or food is graded from a head-of-the-class “A” to a failing “F” based on the quality of ingredients andwhether a food offers any nutritional value.

There’s also a full list of ingredients, nutrition facts panel and bulleted good news/bad news report card for each product. Taste is not considered.

Stanley Rak, FoodFacts’ founder and sole funder, started the site after he was feeding his 3-year-old grandson and noticed the food was sticking to his fingers. “I thought what’s in this?” Rak told me. “So I looked at the label on the jar and couldn’t pronounce most of the ingredients!” Rak then went home and looked at the ingredients in everything in his cupboard. That was the beginning of FoodFacts.com.

2013-04-01-ScreenShot20130401at10.51.33AM.png

I marvel at and support the initiative of one individual doing what he can to protect all of our health. Rak’s aim is to help people eat more nutritiously, eat safely if they have food allergies or dietary restrictions, and create a community where members (it’s free) can share their food findings and experiences.

Rak also hopes FoodFacts.com will influence manufacturers to produce healthier products. For instance, manufacturers can still hide ingredients. “They don’t have to list trans fat on the package if it’s under half a percent,” Rak told me, “but you’ll see it on FoodFacts.” Paid for only by Rak, FoodFacts is entirely transparent and not supported by any advertising.

“Sometimes my neighbors are afraid to invite me to dinner,” said Rak chuckling, but he’s always adding to the site. A recent addition goes back to its roots — a “Baby Nutrition, Allergen and Score Guide” to help new mothers provide their babies nutritious products. “Because,” Rak says, “the abundance of sugar, including hidden sugars, in baby foods is where our lifelong struggle with obesity and nutrition begins.”

 

5 Healthier Foods and Their Scores, as Rated by FoodFacts.com

 

  1. Dreamfields Pasta Linguine Low Carb – (A)Low in calories, fat and sodium, Dreamfields Pasta packs a nutritional punch, providing 40 percent of our folic acid and thiamin requirements, as well as riboflavin, niacin and iron.
  2. Little Duck Organics Blueberry Apple Tiny Fruits (A) – Organic freeze-dried apples and blueberries, this product is low in calories, saturated fat, cholesterol, sodium, contains no controversial ingredients and is an excellent source of vitamins A and C.
  3. Beech Nut Good Morning Oatmeal & Mixed Fruit Cereal (A) – A baby food product with only good news! Low in calories, saturated fat, cholesterol, sodium and contains no controversial ingredients. It is also an excellent source of twelve vitamins and minerals.
  4. Bumble Bee Chunk White in Water Tuna Albacore (A-) – Low in calories, saturated fat, cholesterol, contains no controversial ingredients and contains naturally-occurring vitamins and minerals, and is an excellent source of niacin.
  5. Triscuit Original Low Sodium Whole Wheat Crackers (B+) – Low sodium, low in calories and no controversial ingredients, makes Triscuit a great snack. It doesn’t score an “A” because it’s also low in vitamins and minerals.

 

5 Unhealthy Foods and Their Scores, as rated by FoodFacts.com

 

  1. Hot Pockets Beef and Cheddar Sandwiches (F) – The entire line of Hot Pockets products gets an “F.” This product has multiple controversial ingredients, there is little “good” in this product and it displays a hidden form of MSG. Hot Pockets products have one of the longest lists of ingredients, up to 160!
  2. MorningStar Farms Veggie Chik’n Nuggets (F) – These vegetarian imitation chicken nuggets are high in sodium and contain the controversial ingredients hydrolyzed corn gluten and yeast extract (both are nicknames for MSG). The product also provides little vitamin content. 
  3. Arby’s All American Classic Roastburger (F) – Equal parts good and bad — low in calories, cholesterol and contains Fiber, Vitamin C and Iron. Yet highin saturated fat, sodium, contains a moderate amount of added sugar and several controversial ingredients.
  4. Propel Zero Berry Flavored Fitness Water (D+) – This product has no calories, fat or sugars, but gets a poor grade due to its very controversial ingredients, like acesulfame potassium, potassium sorbate and other preservatives. A great example of a product that looks healthy based on the nutrition label, until you read the ingredients. Plus, researchers are linking 1 in 10 deaths in the U.S. to overconsumption of salt, and this flavored water has over 160 mg of sodium!
  5. Apple and Eve Grover’s No Sugar Added White Grape Juice (D) – While most believe 100 percent fruit juice is healthy, it’s mostly sugar. A single eight-ounce serving of this grape juice contains 38 grams of sugar and 130 calories. Comparatively, Coca-Cola contains 27 grams of sugar. This product also contains “natural flavors,” a label food manufacturers are permitted to use for any number of chemicals that they don’t have to disclose. This usually indicates that the real thing (often fruit) has been left out.

 

Originally published in The Huffington Post

 

1 comment

Stop Eating So Many Carbs — Carbs Make You Fat

There’s been a weighty debate in this country for at least a decade: What makes us fat, carbohydrates or fat?

After years of following alternative weight loss thinkers for my personal knowledge and recently to help people normalize their weight and maximize their health, in my new book Diabetes Dos & How-Tos, I have experienced the answer. My clothes are hanging off of me.

I lost 10 pounds in three months without trying. My goal wasn’t to lose weight. It was not to gain it. Last September I had badly sprained my ankle and was suddenly on crutches and then in a boot cast for three months.

Unable to do my daily hour power walk, I decided I would eat a little less so the scale didn’t climb up. Having been reading about the paleo diet — lean meat, fish, fowl, vegetables, eggs, fruit, high-quality fats, nuts, seeds, no grain or dairy — I decided to follow a modified version: Reduce the carbs in my already low-carb eating plan and add more healthy fat like nuts, seeds, avocados, flax and coconut oil.

Before I go any farther, I have to say what any responsible dispenser of weight and nutrition advice should say: It may be different for you. Our bodies are all different, and there are many complex metabolic processes at play, particularly if you’ve been on a cycle of losing and gaining weight.

But I believe for many people, if you reduce the refined carbohydrates in your diet — white bread, bagels, pasta, muffins, scones, cold breakfast cereal, chips, sweets, soda and sweetened drinks — and add more healthy fats — nuts, seeds, avocados, fatty fish like salmon, tuna and sardines, olives, olive, flax and coconut oil — you’ll likely lose some weight, stop the cycle of ravenous hunger, feel more satiated, and have more energy and more stable blood sugars.

It’s true 1 gram of fat contains 9 calories, while 1 gram of carbohydrate contains 4 calories. It’s also counter-intuitive to think carbs make us fat more than fat. But as Gary Taubes, author of Why We Get Fatand Good Calories, Bad Calories, says in his 2007 article, “Good Calories, Bad Calories,” obesity is not due just to calories but the quality of those calories. And it’s about how fat and carbs get used in our body.

Storing Carbs as Fat

Taubes and other low-carb enthusiasts say when we eat more carbohydrates than we burn for energy, our body ends up storing them as fat, and that this is the primary cause of weight gain and related ills.

It works like this: Refined carbohydrates raise blood sugar. Your body then produces extra insulin to bring your blood sugar down. Insulin is a fat storage hormone. With more circulating insulin in your bloodstream, your body converts the carbohydrates to fat and stores them — on your buttocks, thighs, abdomen and hips. If you have diabetes and don’t produce sufficient insulin, you either take more insulin, or medication that releases more insulin, to cover the carbs.

Dr. Richard Bernstein, a low-carb advocate and diabetologist who wrote the classic book Diabetes Solution, advocates low-carb eating for glycemic control. He also says, as do low-carb advocates, that high-quality fats, including some saturated fat from animals, is healthy and not the cause of obesity or heart disease. This is particularly significant for people with Type 2 diabetes, since most people with Type 2 diabetes are overweight and two-thirds die of cardiovascular disease.

Sugar-Burners vs. Fat-Burners

When I interviewed Mark Sisson last year, paleo advocate and author of the Primal Blueprint, he explained another factor at play for weight gain and loss. People who eat a lot of carbohydrates he calls “sugar-burners.” They burn carbs for energy and need a steady supply of carbs to keep their energy up. Always relying on carbs for energy, they have difficulty accessing and burning their stored fat.

When we eat less carbs, however, said Sisson, people become “fat-burners.” The body first goes for carbs to burn for fuel, but after it burns the small amount of carbohydrates eaten, primarily from vegetables, it then accesses and burns stored body fat, which leads to weight loss.

Benefits of Healthy Fat

While we’ve been taught to think that fat is our enemy, the body needs healthy fats. They help us absorb vitamins, minerals, and antioxidants from other foods. They supply energy, help us build cell membranes, and strengthen our digestive, nervous and immune systems. Healthy fats can also reduce the risk of heart disease, certain cancers, obesity, arthritis, Alzheimer’s, depression, joint pain and inflammation.

Plus, fat and complex carbohydrate foods — like barley, whole oats, popcorn, bulgur, millet, quinoa, sweet potatoes, brown rice, lentils, quinoa, beans and buckwheat — satisfy our appetite, so we tend to eat less. Refined carbohydrate foods — your sweets and chips — tend to make us more hungry, so we tend to eat more.

How I Changed My Diet

Dietitians will tell you not to eliminate any entire food group from your diet, and I didn’t. But instead of eating oatmeal every morning, I ate it four times a week. The other mornings I ate two eggs with a chicken sausage, or cottage cheese with peanut butter or tofu, fruit and nuts.

Instead of putting beans on my dinner plate every night I did it two nights a week and added more non-starchy vegetables like broccoli and cauliflower the other nights.

I changed my lunch from a salad with falafel and hummus, mostly carbs, to a salad of steamed vegetables, lettuce, tomatoes, grilled chicken, a crumble of feta cheese and two healthy slices of avocado with flax oil, herbs, and red wine vinegar.

I saute in coconut oil now and snack during the day on a handful of nuts, and at night on a small bowl of sunflower seeds and a piece or two of premium quality dark chocolate.

I know it’s hard to believe carbs can make us fatter than fat. It also defies the seemingly-healthy labeling on food products. But as you’re reaching for that “no-fat” yogurt, “low-fat” bread, “fat-free” cookie package, look around you. Are most people fat or slim?

When foods have fat removed, they usually have more sugar added to replace the flavor fat supplies. If you accept that an over abundance of carbs turns into fat in your body, you’re not doing yourself any favor to reach for higher-carb, fat-free foods.

The food changes I’ve made over the past six months, for me, were not gigantic. I already ate a low-carb diet. But eating fewer carbs, which spontaneously led to consuming less calories, along with more protein and healthy fat, the weight began to slide off me. It has also stayed off me because this is how I eat now. And, I’m not hungry.

As for the initial three months I went without exercising, I saw while my daily one hour power-walk is a great way to maintain my weight and my health, it didn’t really contribute to weight loss.

I’m not advocating a ban on carbs as a quick weight loss scheme. I don’t believe in quick weight loss schemes or diets. But I am convinced, as a nation, we eat too many carbs, especially refined carbs, more unhealthy fats than healthy fats, and that food marketers are selling us a bill of goods making us think fat is bad while hooking us on poor-quality carbs.

For me, the proof is hanging all around me in the clothes in my closet that are a size or two too big.

Originally published in The Huffington Post

No comments yet

DRI’s BioHub May Cure Type 1 Diabetes

DRI believes the BioHub is the next breakthrough and perhaps the final breakthrough.

 

Scientists at the renowned Diabetes Research Institute (DRI) at the University of Miami may be just five to seven years away from curing Type 1 diabetes. The institute is taking quick and dramatic steps toward what may finally be a biological cure for type 1 diabetes, the DRI BioHub.

The BioHub is an engineered “mini organ” that will house insulin-producing (islet) cells that, like normally functioning islet cells, sense blood sugar and release the precise amount of insulin to maintain normal blood sugar levels. “It will mimic the insulin function of a normal pancreas,” Dr. Camillo Ricordi, DRI’s Scientific Director and Chief Academic Officer, told me in a phone interview. “It will restore natural insulin production for any patient, no matter how long they’ve had diabetes.”

YouTube Preview Image

The DRI is initially focusing on the BioHub’s use in patients with Type 1 diabetes. However, it may also be applicable for a population of patients with Type 2, as the additional islet cells would help normalize blood sugar levels.

2013-03-02-glove.png
The BioHub model (size of a quarter) on purple gloved 
hand. Islet cells can exist in this silicone sponge like disc
that’s compatible with the body or be put in a vein in the 
abdomen that’s tied off into a sac with its own blood supply.
(Photo courtesy of DRI.)

All Needed Technologies Coming Together

“This is the first time I feel the pieces of the puzzle are all falling into place,” said Dr. Ricordi:

For the first time we have the convergence of all the different technologies we’ve been developing over the years, and that we need, those dealing with autoimmunity, cell sources and auto immune suppression, to have a biologic cure.

We have a system for drug delivery in the local micro environment, successful anti-inflammatory strategies to prolong the success rate of islet transplants and we’re making BioHub materials that we’ll soon submit to the FDA. Plus, our experimental models tell us we’re moving in the right direction, toward transplantation without immunosuppression drugs.

 

Overcome Islet Cell Transplant Barriers

The BioHub, if successful, promises to overcome the three obstacles that islet cell transplantation has not — a steady supply of cells that can be harvested from multiple sources, an environment where the cells will reside that is biologically supported, and no need for anti-rejection drugs.

The BioHub would be placed at a site in the body that would give the new insulin-producing cells adequate space to receive proper nutrition, oxygen and protection from inflammation, a far better home for them than the liver, the currently used site for islet cell transplants. The BioHub will be a bioengineered, new pancreas-like home so that transplanted islet cells have a much better chance of thriving.

“If we can identify an optimal place within the body to place the BioHub, then I believe this disease is totally reversible, which has been the DRI’s ultimate goal since our inception,” says Luca Inverardi, M.D., deputy director of translational research.

Right now one of the sites being tested is the omentum, an apron-like covering over part of the stomach and intestine, which is protective, plentiful with blood vessels, and would physiologically be similar to how insulin is released in non-diabetic patients.

Current Timeframe

Dr. Ricordi is very careful to say he doesn’t want to make promises he’s not sure he can keep in terms of a hard-and-fast timeframe for widespread clinical use. “The jury’s still out as to how we will treat thousands of patients, and I want to know how to cure millions and millions.”

However, the DRI has already met the FDA’s requirements to start the process toward research and development, and the first human trials with the initial component of the BioHub and housing materials are expected to take place within a year.

Having the DRI Federation, scientists from Canada, Europe and Asia, working in concert with DRI, also promises an efficient and hopeful timeline, including overcoming unexpected obstacles. “We will know within a year or two if what we have works and if we have identified the ideal source of insulin producing cells,” said Dr. Ricordi.

For those of us who’ve had Type 1 diabetes any length of time, we all remember being told the cure was five to 10 years away. For me that was 41 years ago, and Dr. Ricordi is very aware of the promise that’s been made to so many.

“In 1985 we felt we were around the corner from a cure,” Dr. Ricordi said, “so I don’t want to raise false hopes.” But he is hopeful, and dedicated to the pursuit of a cure.

“Now I think we can make islet transplants work long-term without continuous anti-injection drugs, just by engineering this micro organ in a site that can provide protection to the cells without affecting the rest of the body. I am confident,” said an urgent-pressing Dr. Ricordi, “that this approach may move cellular therapies and biological replacements far enough ahead to bring us to our final goal, the cure for diabetes.”

Originally published on Huffington Post.

1 comment

How Illness Can Make Us Better

Living with a chronic illness is, for the most part, seen as a detriment. And without question, after living with Type 1 diabetes for 41 years, I’d give it up if I could.

The five daily injections and 10 finger-pricks on average I do each day. The heart-stopping moment when something goes wrong and I fear it’s diabetes-related. The never-ending decision-making about everything I do — eat, walk, get on the subway, wait for my delayed flight with no food, go into a meeting or a movie — trying to prevent complications from high blood sugar over time, or losing consciousness at any time from low blood sugar — if low enough it can kill me on any ordinary day.

Yet I titled this “How Illness Can Make Us Better” because it can. Living with illness can also provide opportunities to turn “bad” into “good.” Illness bestows for many, and perhaps particularly for young people, deeper wells of compassion, maturity and the desire to make a difference in the world.

Three AYUDA volunteers who spoke with me when I was writing my previous post “Small Diabetes Organization AYUDA Teaches Self-Care and Social Change” have already, at a tender age, used what others would consider an impediment — their diabetes or their proximity to diabetes — to change the lives of those less fortunate than themselves and inspire hope in places where hope is scarce.

As AYUDA’s elite squad, they have cheered, rallied, role-modeled, touched, taught and brought much for a healthier life to youth with Type 1 diabetes in Latin American countries where poverty is high and health education is low.

Here are excerpts from their stories and a look at how chronic illness can, in some ways, make us better.

Sam Wohns, 22 years old, always had a well-developed social conscience, but AYUDA gave him a stage.

2013-02-19-ScreenShot20130219at5.10.11PM.png
Photo by c+ncreative.com

When Sam was 10 years old, his parents gave him a book on world geography. On the last page was a spinner and whatever country the spinner landed on you had to answer the question, “How many calories do people there eat every day?”

“I learned that many young people live on less than 900 calories a day,” Sam told me. “So the next day I only ate 900 calories of rice. As an act of solidarity.”

Sam signed up as a volunteer with AYUDA the week after his diagnosis of Type 1 diabetes at 17:

I knew having Type 1 diabetes here wouldn’t change what I could do with my life. I also knew in lesser-developed countries it could be life-threatening due to limited access to supplies and education. I saw that as an injustice and I wanted to do something about it.

In Ecuador, there isn’t a single pediatric endocrinologist or nurse educator, so AYUDA’s peer-education model is invaluable. It is not just about sending supplies.

I met a little girl there who could only test her blood sugar once a day and she ran out of strips four days before diabetes camp. She was excited to come to camp, but then her grandmother backed out because it would require her to miss work. We really felt this would negatively impact the girl’s life, so a group of us drove to their home, several hours away, and were able to persuade the grandmother to come.

At camp, she met other parents and grandparents caring for children with Type 1. She learned a great deal to help her care for her granddaughter. Before, she didn’t even know how to administer insulin. That’s just a small example of how we saw a need and built a relationship to help address it. We can’t solve every problem, but we made a difference to that family.

 

Sam is studying social movements of Latin America at Harvard.

17-year-old identical twins Isabel (has Type 1 diabetes) and Madeline Chin

2013-02-19-ScreenShot20130219at5.07.13PM.png

Madeline says she’s always had the luxury of doing something positive without having to live with diabetes like her sister. Together they’ve done advocacy work, a public service announcement, helped children and participated in AYUDA. “It’s always been important to me to be an advocate for diabetes,” said Madeline, “even though I don’t have the disease myself.”

To participate in AYUDA the girls each had to raise $5,500 to cover their expenses. A sizeable sum, Madeline said they never doubted they could do it. They spent their summer writing letters to family and friends, conducting email campaigns and sourcing funds through Facebook.

“The best part of the experience for me,” said Isabel, “was being able to relate to the kids as a diabetic. It wasn’t just about teaching them, but seeing them get so excited about being together with others who had diabetes and take control of their lives. Every night at dinner a new boy or girl would give himself his first shot. We were so excited to be part of it.”

“What stays with me,’ said Madeline, “was while we were reflecting at the end of camp about what went wrong, Merith [director of international operations] said none of it really mattered because even though we couldn’t see it right away, the work we were doing was making a difference in people’s lives and to the diabetes community in Ecuador.”

Both girls are planning to pursue public health when they head off to college next year.

Vanessa Larco, 24 years old, doesn’t have diabetes

2013-02-20-ScreenShot20130220at2.33.12PM.png

Vanessa’s long had diabetes in her family. Her mother, a doctor, has a diabetes clinic in Haiti where Vanessa grew up. “My parents and my grandfather always talked about helping others and sharing what you have,” said Vanessa.

“Being in the Dominican Republic really opened my eyes, in a good way. I saw the kids rally around the international volunteers. They saw how well they were living with their diabetes it made them feel better about themselves. The parents, seeing people who’ve lived with diabetes for decades, thought maybe my child will be okay. There’s a stigma attached to diabetes, but after seeing the volunteers they didn’t think that way anymore.”

“This experience changed me. Before, I helped people because that’s how I was raised. But I feel like I’ve become a better person, that it’s really in me now. Every time I talk about my experience, or just remember the kids smiling, I can’t keep from smiling.”

Vanessa’s already told her company she’s going back again next year.

I won’t tell you living with a chronic illness is easy. I won’t tell you it isn’t isolating or a burden, or that it doesn’t come with struggle at times. But it can also offer the opportunity to live life more fully, more compassionately, with greater purpose, empathy, appreciation and pride.

Or as Sam said, “the opportunity to make a huge impact and change lives, including your own.”

Sam, Madeline, Isabel and Vanessa also prove being a change leader has no age limit. This is number 18 in my series on diabetes change leaders.

Originally published on Huffington Post.

No comments yet

Small Diabetes Organization AYUDA Teaches Self-Care and Social Change

Sam is a 21-year-old student at Harvard who has already spent four years in and out of Latin America helping local diabetes agencies and youth with diabetes. A week after Sam’s diagnosis with Type 1 diabetes at 17, he became a volunteer with AYUDA (American Youth Understanding Diabetes Abroad).

His experience with Ayuda has likely been as vital to his preparation as Harvard will be to achieve his ambition: empower businesses to solve social ills.

AYUDA, run by three full-time and one part-time staff member under the leadership of co-founder and chairman Dr. Nick Cuttriss, brings diabetes education to nine Latin American countries, primarily Ecuador and the Dominican Republic. It also raises the social conscience of its volunteers.

2013-02-12-0.jpeg

In the countries where AYUDA works, Merith Basey, director of international operations, told me as much as 40 percent of the population live on less than $2 a day and blood glucose test strips cost approximately $1 a strip.

(Photo: Merith Basey and a young participant, Melissa, in Ecuador)

A Small Organization Fulfilling a Big Goal

AYUDA is different than other humanitarian diabetes organizations, and I am fascinated by its proposition. First, it brings diabetes education and human resource support, not medical supplies, to local diabetes communities in need. As Basey told me, “Providing insulin and strips alone, we know isn’t going to result in healthy, happy children. A lack of education is as dangerous as a lack of insulin.”

Second, its founding principle is youth helping youth. AYUDA was founded in 1996 by Dr. Cuttriss (today a pediatric endocrinology fellow in Miami as well as AYUDA’s chairman of the board) and a friend when they were 16 years old and had a friend who had Type 1 diabetes. Helping their friend, they were soon helping other young people with diabetes, and they saw young patients connected more with, and were more responsive to, them than they were to adults and medical professionals. They experienced the power of peer-mentorship.

Third, AYUDA grew its mission after learning how their volunteers’ experiences were affecting them.

“We set out to provide education and support to local diabetes communities in conjunction with our local partners,” said Basey. “But as our volunteers began to see diabetes in a global context, which they hadn’t before, their focus changed. Many college students changed their majors to global health studies, public health, pre-med or human services.”

AYUDA aims now to plant a seed for social change and entrepreneurship in its volunteers.

AYUDA also saw the experience led many volunteers to take better care of their own diabetes. Plus, siblings of volunteers who participate, never having had a role to play alongside their sibling before, now do, and this benefits the family dynamic of diabetes.

I asked Basey, who does not have diabetes, what keeps her doing this work after eight years. “I’m consistently inspired by how quickly children, young people and families with diabetes change when they realize that there is hope, when they get the knowledge they need and see that they can manage this condition and live healthy normal lives.” 

2013-02-12-01.jpeg“We estimate we’ve reached about 70 to 80 percent of children and youth with Type 1 diabetes in some of the countries we’re working in with our partners,” said Basey. “And I feel it’s our responsibility to continue and to grow. We’re also reaching more people more quickly after diagnosis and that means more children will suffer fewer complications.”

(Photo: Camp in Ecuador run with AYUDA partners la Fundacion Diabetes Juvenil Ecuador)

Becoming a Volunteer

AYUDA volunteers are mostly high school and college students, and about 50 percent are living with Type 1 diabetes, but you don’t have to have diabetes. Volunteers participate in online training in diabetes, global health, social entrepreneurship, advocacy, and must also fundraise to cover their own expenses and help fund the educational camps where they’ll be working. AYUDA only receives some revenue from foundations and private donors.

Volunteers then congregate in Washington, D.C. over the summer to meet with AYUDA’s local partners and finally go in-country where they work with those partners, and volunteer medical professionals, on local projects, including spending one to three weeks at educational diabetes camps. Volunteers may also make in-home outreach visits to families that live far from the capital cities.

Thirty percent of AYUDA’s volunteers volunteer more than once, and many more stay involved in some capacity. Almost 100 percent, Basey said, find that while the experience often wasn’t what they expected, it has an enormously positive impact on their life. And that’s just what AYUDA wants.

“We hope while we bring change in Latin America,” said Basey, “we are helping young people have a broader vision of what is possible and their capacity to create change, whether that’s in the diabetes community or somewhere else.”

Apply: AYUDA is taking volunteer applications through Feb. 26.

In my next post, I’ll bring you the thoughts and experiences from some of AYUDA’s volunteers.

Originally published on Huffington Post.

No comments yet

‘The Doctors’ Links Food to Brain Health

Ok, they got me with the promo. “This is your brain. This is your brain after making poor food choices. Next on The Doctors.” The image was a brain shrinking. So I had to watch.

I learned some interesting findings about food and brain health, and also which foods help heal and prevent some common ailments, including low mood and energy.

While most of us know we should be eating more fruits and vegetables and less sugar, processed foods and refined carbohydrates, it appears, as seen from brain scans, that brains actually shrink as you become obese.

It’s also interesting that our brains compel us to eat more when we eat sugar and foods containing sugar, including fructose. They stimulate the pleasure center of the brain. That stimulation drives the brain to want more. Your brain then sends you a signal that it’s not satiated, so eat more! In contrast, when you eat a low sugar meal the pleasure center of the brain calms down.

Here’s the list of what foods may help benefit what ailments:

Cold Sores: For prevention, try oil from the lemon balm plant. To slow the viral growth, honey and yogurt both may help.

Bruising: Beans, kale and pineapple can help speed healing due to their anti-inflammatory properties.

Macular Degeneration: While most fruits and vegetables support eye health, kiwi and fatty fish like salmon and tuna can help slow the progression of macular degeneration.

Sinus Infection: Eat foods high in zinc, particularly oysters, lean meats and whole grains. They can help prevent colds and flu, which can lead to sinus infections.

Sex: To fuel your libido, reach for nuts, oysters and garlic.

Dry Flaky Skin: Mangoes help act as an internal moisturizer.

Fine Lines, Wrinkles, Age Spots: Cottage cheese for its antioxidant properties.

Acne/Rosacea: Mushrooms for their riboflavin and anti-inflammatory properties

Psychiatrist Dr. Drew Ramsey, co-author of The Happiness Diet, cited these top five foods as brain-boosters and mood-enhancers:

1. Mesclun greens 
2. Walnuts 
3. Red beans 
4. Blue and red skin potatoes 
5. Coffee and chocolate

Dr. Ramsey also stated, “Food choices may affect your brain more than anything else,” and cited studies that link poor diet to depression. Those who eat more processed foods seem to have an increase in depression. Ramsey recommended wild salmon and shrimp and cherry tomatoes as mood-enhancers.

You can catch excerpts from the program, and much of this information is also in the book the show highlighted, Foods That Harm, Foods That Heal.

Originally published on Huffington Post.

No comments yet

‘Talk to Your Doctor’ May Not Help if You Have Diabetes

Recently, while traveling to Arizona to give a diabetes workshop, I was struck again by the lack of knowledge and urgency many physicians have regarding diabetes.

Seated at the airport, my husband was talking to a woman about health, whose clearly-overweight mother was sitting next to her. The woman said her mother was on a lot of pills and her doctor wants to put her on another one. My husband asked, “Does she have diabetes?” 

“No,” said the woman. My usually-quiet husband persisted, “Has your mother had a recent blood sugar test?”

“Yes, her blood sugar was 187,” said the woman. “But the doctor said that’s nothing to be concerned about.”

Depending on the test, a blood sugar of 187 mg/dL (10.3 mmol/L) can very much be something to be concerned about. It may mean you may either have diabetes or pre-diabetes. “What did her doctor advise her to do?” I asked, expecting at least lifestyle guidance if not medication.

“Nothing,” said the woman staring at us, confused.

About one-fourth of the nearly 26 million people in the U.S. with diabetes don’t know they have it. That’s a little more than 7 million people walking around with undiagnosed, untreated diabetes.

Of the nearly 80 million Americans with pre-diabetes, far fewer likely know they have it — even while most medical professionals consider pre-diabetes the first stage of Type 2 diabetes.

Plus, people with pre-diabetes, just like those with Type 2 diabetes, are at higher risk for heart disease, stroke and eye disease.

Unfortunately, many family physicians have not been specifically trained in diabetes. As endocrinologist Irl Hirsch told me, they probably got a half day training on diabetes in medical school 25 years ago.

Many simply aren’t knowledgeable about the latest guidelines for diagnosing diabetes, newest medications and devices, or recommended treatment protocols. Nor do some seem to take higher than normal blood sugar seriously, caution their patients and recommend lifestyle changes — like healthy eating, weight loss and activity. 

Know the facts. First, know if you’re at risk for diabetes.

Risk factors for Type 2 diabetes. You:

  • Have a family member with Type 2 diabetes.
  • Are overweight.
  • Are sedentary.
  • Are African-American, Hispanic, Native American, Asian-American or Pacific Islander.
  • Have high blood pressure (140/90 or higher).
  • Have polycystic ovary syndrome, a female hormonal disorder.
  • Have acanthosis nigricans (skin around neck or under armpits appears dark and thick).
  • Gave birth to a baby weighing more than 9 pounds.

If you have one or more risk factors, get your blood sugar tested. Tests to diagnose diabetes:

1. Fasting plasma glucose test (FPG) — A blood sugar test performed before breakfast. A blood glucose (sugar) level of 126 mg/dL (6.9 mmol/L) or above indicates diabetes. A level between 100 and 125 mg/dL (5.5 – 6.9 mmol/L) indicates pre-diabetes.

2. Oral glucose tolerance test (OGTT) — A blood sugar test two hours after you drink a sugary drink. A blood sugar reading of 200 mg/dL (11 mmol/L) or above indicates diabetes. A level of 140 to 199 mg/dL (7.7 – 11 mmol/L) indicates pre-diabetes. 

3. A1C test — Gives your blood glucose average over the past three months. It doesn’t require fasting. An A1C of 6.5 percent or above indicates Type 2 diabetes, and 5.7 to 6.4 percent indicates prediabetes.

2013-01-21-ADAScreenShot20130120at11.18.29AM.png

(Graph from the American Diabetes Association. Used with permission.)

Diabetes is increasing so quickly that at least one-third of Americans born after 2000 are expected to get Type 2 diabetes. Diabetes is the seventh leading cause of death in the U.S.

Ask for a blood sugar test if you have a risk factor for diabetes and compare your result to the ranges on the graph. If you’re in the range for diabetes or pre-diabetes, ask your doctor what you should do. If your doctor doesn’t advise you to do anything, consult another doctor.

“Talk to your doctor,” as pharmaceutical commercials urge us to do, may not be the answer when it comes to a diagnosis of diabetes. Take charge of your own health; it’s in your, and your family’s, interest.

While diabetes complications take years to develop, many people already have complications when diagnosed because they’ve had undiagnosed, untreated diabetes and pre-diabetes for years. And while celebrities rail on TV, “Diabetes doesn’t control me, I control my diabetes,” first, you have to know that you have it.

Originally published on Huffington Post.

No comments yet

The Power of Patient-Expert Books

When the proposal for my second book was being shopped around in 2008, my book agent heard again and again from publishers, “We need a doctor’s name on the cover!” As if a book about an illness, and treating it, is only credible if a credentialed health care professional wrote it.

Today, more and more books are being written by patients — well-educated, informed patients who manage their illness successfully and have experience, practical knowledge and insights to share with other patients.

As the new year incites a rush to become a “new, better and healthier you,” we often do so learning from our peers. When it comes to illness-warranted behavior changes, as like seeks like, it’s often easier to make changes learned from fellow patients with whom you share the experience of a disease. Like support groups and mentor programs, this is fertile soil for positive behavior change. So, I applaud the rise of patient-authors.

Patient-authors also narrate the experience of illness. That is why I hope health care professionals (HCPs) are also reading books written by patients. A book like No-Sugar Added Poetry, for example, can give HCPs immediate access to some of the emotional landscape of living with diabetes.

There is, in my mind, no easier or quicker way to tap into the experience of illness — what patients grapple with, how they feel, and the practical things that must be managed every day — than by reading a patient-written book.

When clinicians do, I believe they will become more mindful and compassionate and the relationship with their patients more trusting. And that can lead to better outcomes for both.

On the diabetes front, I read two new patient-written books late last year, including Amy Mercer’s second book, The Smart Woman’s Guide to Eating Right with Diabetes. It’s a collective of wisdom and tips from several smart women with diabetes, including its author, sharing how they manage their blood sugar and carbs while still eating things they love. Her previous book is The Smart Woman’s Guide to Diabetes.

I also read Ginger Vieira’s second book, Emotional Eating with Diabetes. Her first was Your Diabetes Science Experiment. As a wellness and diabetes coach, Vieira guides readers to develop a healthier relationship with food, and the book comes with worksheets and coaching questions. “When you live with diabetes,” says Vieira, “every meal can feel like work and often comes with guilt or shame over any imperfect choices. Unless you live with this disease yourself, it’s impossible to know the day-to-day emotional weight food carries living with diabetes.”

2013-01-03-ScreenShot20130103at2.40.42PM.png

My own third and just-released book, Diabetes Dos & How-Tos, is what you don’t get from 12-minute visits with your doctor, yet need: a simple, clear, easy-to-follow and practical guide of the small, yet powerful steps to achieve your optimal diabetes health. The book covers managing food, medicine, fitness and staying positive. I felt compelled to write this book after traveling the country and seeing how many patients are confused and overwhelmed by their diabetes, and as a consequence they suffer complications needlessly. Diabetes Dos & How-Tos is also useful for health care providers to more fully engage and involve patients in their care and guide them through their own chosen, doable actions.

Earlier last year, I read Chuck Eichten‘s The Book of Better, a treatise that we’ll never get it perfect, but we can get it better; Lynn Crowe’s The Diabetes Manifesto, that shared her personal struggle; and an anthology of patient stories in Beverly Adler’s My Sweet Life: Successful Women with Diabetes. Her follow up, My Sweet Life: Successful Men With Diabetes, is on my to-read pile.

The power of books written by patients is that you get the inside view of living with illness and practical, real-world guidance on what works. The power of books written by patients who are also medical professionals offers something again — medical expertise with empathy. On my bookshelves are the works of certified diabetes educator/patient/authors Gary Scheiner, Sheri Colberg, Wil Dubois and Joy Pape.

2013-01-03-ScreenShot20130103at2.08.13PM.png

 

2013-01-03-ScreenShot20130103at2.42.44PM.png

 

Matthew Lore, the editor who bought my second book that turned into 50 Diabetes Myths That Can Ruin Your Life, in 2001 published the first of two books in a series written by people he identified on the cover as “patient-experts.” One of those books was Gretchen Becker’s A Patient-Expert Walks You Through Everything You Need to Learn and Do: The First Year Type 2 Diabetes. It’s still one of the best-selling diabetes books, as is patient-expert Jenny Ruhl’s Blood Sugar 101: What They Don’t Tell You About Diabetes.

Lore told me through an email:

“I gleaned from message boards early on that patients wanted to communicate with each other, and that well-informed patients, with a gift for communicating what they had discovered about their condition, were a legitimate source of credible and meaningful information that could benefit others with the same or a similar condition.”

Lore was right. I find it confirmed every time I read a patient-expert book also outside of diabetes: Richard Cohen’s Blindsided, about his multiple sclerosis and cancer; Cohen’s and Jill Sklar’s books that chronicle several patient experiences, Strong at the Broken Places and The Five Gifts of Illness, respectively; Jill Bolte Taylor’s My Stroke of Insight, about her massive stroke; Kathryn Greene-McCreight’s Darkness Is My Only Companion, about living with bipolar disorder; Kay Redfield Jamison’s An Unquiet Mind, about her manic-depression; Temple Grandin’s The Way I See It, about her Asperger’s; and Michael J. Fox’s book, Always Looking Up, about his living with Parkinson’s disease.

2013-01-03-ScreenShot20130103at2.15.11PM.png

Having Type 1 diabetes himself, Lore knew the value of patient-experts and the power of their books. For patients, it’s connection, shared learning, support, and inspiration from which to make positive changes. For health care providers, invaluable insight into the everyday lives of patients that can transform how they work with patients.

Originally published on Huffington Post.

No comments yet

10 Diabetes Advances of 2012

As we count down the days to the end of the year, here’s a round up of 10 diabetes products, drugs, gadgets, and insights that occurred in 2012.

Many of these tell me that companies are listening harder to patients’ wants and desires. And with any luck, all of these will make life a little better in 2013 for the 26 million Americans with diabetes.

1.  Tandem’s t:slim insulin pump. The first insulin pump with a touch screen interface that’s bright, gorgeous and emulates the look and feel of an iPhone/iPad. Slim enough to fit into your jeans pocket, Tandem also says its insulin delivery system provides greater accuracy and more precise dosing.

2.  Dexcom’s G4 Continuous Glucose Monitor. Dexcom has for many years been most patients’ continuous glucose monitor of choice. Now with its fourth generation CGM, the G4 features an extended 20-foot range, a smaller and more accurate sensor, and a more attractive receiver that comes in three different colors and has a color display so you can more immediately see your blood sugar highs and lows and recognize how you’re trending.

3.  iBGStar mobile glucose monitor. We saw it coming, and it came, from Sanofi. A blood glucose meter, smaller than a stick of gum, that fits into your iPhone, increasing the odds that you’ll actually have it with you. With its own app, you can download your blood sugar numbers, see your patterns and email your results to your health care provider. You can also use the iBGStar alone, separate of an iPhone.

4.  Smaller OmniPod. The FDA finally approved Insulet’s next-generation OmniPod tubeless pump. It’s 30 percent smaller, 40 percent lighter and coming out early next year.  

5.  Poor vision aided by iPads and Kindles. Research suggests backlit tablets like iPad and e-readers help patients who suffer some diabetes-related vision problems to read. This may help the millions of people who suffer from diabetes eye diseases like macular degeneration and diabetic retinopathy.

6.  Lucentis, new drug for diabetic macular edema. The FDA approved the drug Lucentis from Genetech, the first major treatment for diabetic macular edema. Diabetic macular edema (DME) may occur as a result of high blood sugars over time when fluid leaks into the retina, the part of the eye where straight-forward vision occurs. DME can cause blurry vision and vision loss. Lucentis is administered as a once-a-month injection. 

7.  SENSUS pain killer for diabetic neuropathy. Medical device company NeuroMetrix recently gained FDA approval so that it can make its SENSUS device widely available. SENSUS transmits transcutaneous electrical stimulation to alleviate chronic pain in the lower leg and foot, often caused by the neurological complications of diabetes. The device is worn on the upper calf and generates an electric current that stops nerve pain signals from reaching the brain.

8.  MRI brain scans reveal empathy helps manage pain. Not surprisingly, at least not to me, researchers discovered that when doctors listen and express empathy, patients end up both more satisfied with their visit, and healthier. And now they can point to MRI brain scans that showed a neurobiological link: Patients who were treated by empathetic doctors were better able to tolerate pain. While it was a small study, it seems intuitive as well as biological.

9.  Treating Pre-Diabetes Can Prevent Diabetes. Good news for the almost 80 million Americans with pre-diabetes. The latest observations from the ongoing Diabetes Prevention Program Outcomes Study show that a key to preventing diabetes in people with pre-diabetes is enabling insulin-producing beta cells to rest, even briefly, and restore normal blood sugar regulation. This protects the beta cells from exhaustion and death. So apparently, the key to diabetes prevention is not how the disease is prevented, but restoring normal glucose regulation, even briefly through lifestyle changes and possible medication. 

10.  T1D Exchange accelerates Type 1 diabetes research. The T1D Exchange has established a unique model to speed better treatments, therapies and research for Type 1 diabetes. Created through funding from the Leona M. and Harry B. Helmsley Charitable Trust and consisting of a network of 69 clinics across the U.S., a biorepository, Clinical Registry and the social media site, Glu, that launched this past November, the T1D Exchange fosters faster and more fluid information-transfer and sharing among diabetes patients and clinical, research, pharma, medical device, education and outreach organizations.

2012-12-05-ScreenShot20121205at1.38.22PM.png

Disclosure: I was not asked to write about any of these products, nor compensated in any way. I attended a press conference for the launch of the iBGStar, where I was given one as a sample.

Originally published on Huffington Post.


No comments yet

Page 5 of 13« First...34567...10...Last »