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

Itamar Raz: A Few Years Away From Preventing Type 1 Diabetes

Forty years ago I was diagnosed with type 1 diabetes. I was told — as we all were — that the cure was five to 10 years away. There still is no cure, but I just interviewed the man who may be a breath away from preventing type 1 diabetes.

“Right now we can diagnose who will develop type 1 diabetes within five years.” — Diabetologist Itamar Raz.

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Last month after I was in Dubai to cover the International Diabetes Federation Congress, I went to Israel where Professor Raz’s secretary, working extremely hard, found 30 minutes for me to meet with Raz.

Professor Raz is Director of the Hadassah University Hospital’s Diabetes Unit and one of the world’s leading researchers and clinicians in diabetes. Raz’s work is changing the future of type 1 and type 2 diabetes.

But what I remember from the almost 50 minutes we spent together is the warmth that radiated over his desk toward me. His bright blue eyes that never left mine and how intensely present he was, wanting me to understand both his work and the fact that he is still a simple doctor who wants to ease patient’s pain. 

This is Part I of a two-part interview and the 14th in my series of profiles on diabetes change leaders.

Q: Tell me about the work you’re doing to prevent type 1 diabetes.

Itamar Raz: Before you develop type 1 diabetes, for most people and mainly in children, you develop antibodies against your pancreas. Most of the time it is two or three antibodies. When these antibodies are seen in a child you know that he/she will most likely develop diabetes within three to four years. If you follow such children you can track how fast they respond to glucose with their own insulin secretion. The moment they are not responding as quickly as before you know it’s only another year before they will develop diabetes.

We have an assumption about how type 1 diabetes occurs. When the beta cell is under stress, current theories suggest from a possible viral disease or early exposure to cow’s milk (rather than breast milk) we don’t really know yet, a part of the cell and a protein inside the cell get exposed in a way that the white blood cell sees the beta cell as an invader and attacks it.

Now we’re trying to stop this attack. Simply, we’re injecting an antigen (a foreign molecule that triggers the body’s production of an antibody) that the cell expresses when it’s under stress. Then we’re stimulating the part of the protein inside the beta cell that goes into action to prevent the attack. When we inject this antigen into animals we can prevent diabetes.

Different studies have been done with other antigens but they have all failed. But three weeks ago we were the first in the world to show in our study that what we are doing works in newly-diagnosed diabetic patients. We are in trials now and soon hope to try it in young children before they develop diabetes to see if we can stop the disease from occurring.

 

Q: Do you think we will see a cure for type 1 diabetes in your lifetime?

IR: I think it’s a hard question. Hoping that my life will extend for another 20 or 25 years, I’m sure we will see many treatments emerge to stop the attack on the beta cell without causing damage to the patient. Whether we will have a full cure I don’t think so, but I don’t know.

A cure may come in three ways. Either we’ll turn stem cells into beta (insulin-producing) cells, or infuse beta cells, or it will be some kind of artificial pancreas. Stem cell therapy is still very far away from being a solution. Islet cell transplantation is a big disappointment. We learned that within three years most patients are insulin dependent again.

I think we’re going to have an artificial pancreas within five or 10 years that will make the life of someone with type 1 diabetes much easier. You won’t have to check your blood sugar and you’ll be able to live more or less a normal life. You won’t have to deal with diabetes all day long and you’ll have an A1C that will probably protect you most of the time from complications.

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Photos ©Riva Greenberg

Q: Why did you go into this work?

IR: I went into medicine because I love to help people. This is me, I love people and I love to give.

When you are a doctor you are like a god, and you can be a good or a bad god. You are a bad god if a patient comes to you and you say, “Why don’t you do this! Why don’t you do that! What you are doing now, you are killing yourself!” You can be a good god if you show your patient that most of the time things are not so bad and you take whatever he worries about and help him worry less. You have a lot of strength in your hand to do good for people.

I went into diabetes for two reasons. I found it very interesting and I thought that this was going to be the main disease the world would face. I saw how our lifestyle was changing. I was right, but 30 years ago no one thought this way.

The other reason was I thought I’d like to have a little time for myself. If I was a cardiologist I’d be running to my patients all hours of the day and night. I didn’t go into cancer because at the time I thought what can I do about cancer? But, diabetes, I thought I’ll have a little time for myself. Of course do I have any time for myself? No, but I love it. 

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Paula Deen’s Diabetes: Are We Getting the Right Message?

The blogosphere was thrumming about whether the Food Network’s down-home Southern queen, Paula Deen, has Type 2 diabetes. Yes, by now you know she does.

It doesn’t bother me that she kept it “close to my chest” as she announced on the Today Show to Al Roker. She said she didn’t want to talk about it until she had something to offer her public.

So I’m left to wonder, did the three years it took Deen to come clean mean she waited until she could help others by being spokesperson for a new Novo Nordisk campaign, “Diabetes in a New Light”? (Deen takes Victoza, a Novo Nordisk injectable, to manage her diabetes.) Or should we finally recognize and admit, just as Deen now has, that diabetes is a lot for a person to take in and learn how to responsibly manage?

No matter what Deen’s real reason was for keeping her diagnosis mum, I applaud that she’s now using her popularity to help inspire the millions of Americans who eat as she ate: an unhealthy high-fat, high-carb, excessive-calorie diet.

What I fear, however, is that too many Americans will still dismiss weight and healthy eating as inconsequential to managing diabetes. Already Deen appears to be dragging her feet on just saying that being overweight or obese, along with a lack of physical activity, is one of the most common causes of Type 2 diabetes. Together, these factors are responsible for nearly 95 percent of diabetes cases in the U.S.

When asked by Roker what the main causes of diabetes are, Deen seemed to fumble and then said genetics, age and lifestyle (an easy cover for unhealthy eating and excess weight), and put emphasis on stress. 

In the USA Today article, “Paula Deen Spreads Word About Diabetes in Down-Home Manner,” Deen answered who gets diabetes by saying, “It’s about heredity. It’s about age, lifestyle, race.” Funny that weight has once again gone missing in this string of risk factors.

Let’s also be clear: Age is becoming less and less relevant to who gets Type 2 diabetes, with increasing obesity in children. According to the U.S. Surgeon General, the number of overweight children in the U.S. has doubled and the number of overweight adolescents has tripled since 1980. The CDC reports 151,000 youths under the age of 20 have diabetes, and cases of Type 2 diabetes among youth and adolescents has been reported with increasing frequency. Understand there’s a reason why Type 2 diabetes, once called “adult-onset” diabetes, is no longer.

I applaud Deen for coming out. I give her a lot of credit for putting her credibility and career at risk and for all she’s overcome in her life, including crippling years of agoraphobia and poverty.

I also love the positive take of Novo’s campaign, a new light – diabetes is not a death sentence. We can live with diabetes and have a full life.

I only hope as Deen leads a nation of almost 26 million with diabetes and 79 million with pre-diabetes that she doesn’t sidestep the importance of healthy eating, maintaining a normal weight and activity. Let’s not soft-peddle the “lifestyle” bit and merely replace it with medicine. 

As those of us in diabetes do know, the Diabetes Prevention Program in 1992 with 3,000 participants showed that 58 percent of participants — across all ethnic groups, for both men and women — reduced their risk of developing Type 2 diabetes with moderate weight loss and exercise. In those over age 60, the risk reduction was a whopping 71 percent! Those participants who were taking metformin, an oral diabetes drug, only reduced their risk by 31 percent.

So Paula, keep it going, keep it clean and keep it real. Let’s not create more diabetes myths, and let us do recognize that managing diabetes takes a personal commitment to healthy eating, proper weight, activity, being well informed, yes, managing stress and yes, taking your meds if prescribed.

And let’s particularly stress that healthy eating, weight and activity are the best tools the nearly 80 million Americans with pre-diabetes have to prevent or delay their diabetes diagnosis.

What do you think? Are we spreading the right message by having Paula Deen as a spokesperson for diabetes?

Originally published on Huffington Post.

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A ‘Bucket List’ to Change Your Life Right Now

In the movie, “The Bucket List,” Jack Nicholson and Morgan Freeman, both dying, create a wish list of things to do before they die — their “bucket list.” I got to thinking, why not create a list of what’sin my bucket now, rather than what I still want to fill it with? 

Most of us know that when we appreciate what we have instead of looking at what we don’t, we’ve got our hands on a pretty powerful elixir. Appreciation is like a drug. Just taking a few minutes a day to appreciate what we’re grateful for can make us more energetic, confident, flexible, creative, open, connected, happy, able and strong.

So here’s perhaps the first ever “What’s In My Bucket List.” While it’s a bit random, it’s a bucket-full of things I have, am grateful for and have learned so far.

My “What’s In My Bucket List”

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llustration ©Riva Greenberg

1. I’ve had, and have, lots of love in my life and many opportunities to love. I have a loving, supportive husband, great friends and family members I still talk to.

2. I’ve wondered for decades what my mission was, and because I never stopped asking the question, I found the answer. Now I live it in the work I do every day.

3. I have a chronic illness — type 1 diabetes — that has given me greater empathy for others and shown me my strengths and determination in a way that I can’t deny.

4. I never lacked for food or shelter, not even when I fed for years on tuna subs (college) and shelter was an attic apartment where I slept with a frying pan (also college, but alas another story).

5. I had two girls bully me throughout junior high school, which gave me the resolve to always fight for the underdog, and I always do.

6. I may not be the brightest bulb in the box, but I am persistent and persistence has brought me everything. It allowed me to find a home where I wanted to live and gave me a magazine column I wanted to write.

7. People have always trusted me with their heartaches and secrets. I have always relished that trust.

8. I’ve learned the power of language: Stop using “can’t,” “don’t,” “should.” Start using “yet.”

9. Vegetables are my drug and will pave my way into heaven

10. I try to meet people where they are without judgment. After all, if I’m not always having a great day why should I expect that they are?

11. I’ve learned that doing more of what I love, more often, makes everything better. I prescribe it to others.

12. I spend more time acknowledging the small successes on the way to wherever I’m going. Those small successes are where I experience my growth, and they give my work its delight and sense of play.

13. I’m grateful for the people who seem to just show up in my life, who are kind and help me on this journey. They are the sunshine that gets me through the darker days.

14. I’ve learned that being bold is not about ego, but inspiring others. I’ve also learned, even if I embarrass myself, everyone else is too self-absorbed to notice or remember.

15. Most of all I’ve learned the only thing to be is authentically me. How I wish I had known this when I was younger!

I plan to renew this list every year. I know looking at what’s in my bucket makes me happier now and is a pretty good way to avoid regrets when the end comes.

What’s on your “What’s In My Bucket List”? Writing one is a great way to see how much you already have.

Originally published on Huffington Post.

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Dear Santa

I posted this last year on the Huffington Post but if you missed it I’m reposting it here. It makes me laugh and I’m hoping it makes you laugh too. And, humor can’t be overrated for any of life’s ills.

This year perhaps it’s even more significant because I’m posting it while vacationing in Jessica and Mike’s backyard, Tel Aviv.

 

Dear Santa,

 

All I’d like this Christmas is for you to take this diabetes away. I’m so tired of it already. All the time stabbing my fingers for blood and guessing when my sugar’s too high or too low.

 

Now that I’m in menopause I can barely tell whether I’m sweating because I’m losing estrogen or because my blood sugar’s crashing at 50 mg/dl!

 

And, can we talk… I mean the constant figuring out how many carbs are in a ravioli or bread stick or that fried calamari that will be at the company Christmas party. Some days I just want to lie down and shoot myself. Please, please, Santa, would you take this diabetes away?

 

Sincerely,

Riva

 

***

Dear Riva,

 

I’m very sorry you’re having a tough time during my favorite season. I only want people to be singing carols and drinking eggnog and feeling good cheer. Unfortunately, it says in my contract that I’m not allowed to interfere with life’s natural occurrences. So here’s my suggestion: although you’ve already opened your holiday gifts, go back and look under your Hanukkah bush for the gift in having diabetes.

 

You may have to spend a few days looking, so why don’t you schedule it for the week between Christmas and New Year’s while you have some down time? Then you can start the new year fresh.

 

Best wishes,

Santa and the gang

 

***

Dear Santa,

 

A gift in my diabetes? What are you, crazy? Meshuggah? Thanks, but no thanks!

 

Riva

 

***

Dear Rabbi,

 

I seek your wise counsel. I wrote to Santa to take away my diabetes, but he wasn’t helpful at all. Surely you who have studied the Torah and represent our people who have suffered throughout history can help me with this awful diabetes.

 

It’s such a strain, Rabbi. I have to test my blood sugar when I really want to be lighting the sabbath candles. I forgot all about the High Holy Days this year because I was so busy counting carbs in the Challah, bagels and honey cake.

 

Rabbi, please, what solace can you offer me? What words of wisdom? Surely you would tell me to just forget about this diabetes thing and go shopping, right?

 

Please write soon,

Riva

 

***

Dear Riva,

 

Santa and I just returned from the Caribbean, and he told me about your difficulty. He said he told you to look for the gift in your diabetes. I concur with Santa; there are many gifts to be found in diabetes, if you look. For one, my child, you won’t have to drink the traditional Manishewitz holiday wine anymore. The Counsel all agree that it is much too sweet. Bring out the Chardonnay!

 

When Santa asks you to look for a gift in your diabetes, he is not saying this because you are not Catholic and he is not bringing you anything, although this is true. He is speaking like our brothers the Buddhists, who profess that there is a gift in everything if you look for something positive that it can bring into your life.

 

Let me tell you a story, my child. My own Aunt Sheila had diabetes, and after she stopped kvetching, she went to a spa and learned how to eat healthfully. She shopped along Rodeo Drive and bought a cute little jogging outfit and started running. On her jog along the ocean she met her fourth husband, Marvin, and they’re very happy. They just moved into a $6 million mansion in Jupiter, Fla. — right next to Burt Reynolds! Everyone’s plotzing! The house was in foreclosure so they have even more money to decorate!

 

Darling girl, find a gift in your diabetes, because to be honest, since you’re not orthodox, and all I have are these great wigs I got on sale from my cousin Schlomo, I’m not bringing you anything, either. And really, it’s not very pleasant to whine.

 

Shabbat Shalom

Rabbi, Local Union 107

 

***

Dear Rabbi,

 

I thought about what you and Santa said and have decided to become a Buddhist. I picked up the Dalai Lama’s book, “The Art of Happiness.” He says, “Happiness is a butterfly, which when pursued, is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you.” I told my friend Joe I like butterflies, and I like the robe, so these aren’t bad gifts.

 

Joe said the quote meant that we are the source of our happiness, that happiness can only come from inside us, regardless of what happens in our lives. Hmm, I said, maybe I need to learn more. So I booked a flight to Tibet.

 

Now if only I didn’t have to drag all this damn diabetes stuff with me…. ohm… ohm… oy.

 

Riva

 

 

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How 24 Women Live Successfully With Diabetes

My Sweet Life: Successful Women with Diabetes is a heartfelt and inside view of 24 women’s lives. Women, who have each found a way to successfully manage a career and/or their family and their diabetes.

The book’s publication is the successful accomplishment of clinical psychologist and certified diabetes educator, Dr. Beverly S. Adler, who has had type 1 diabetes for 36 years. Adler followed a personal conviction to bring these stories of inspiration and triumph — and often times hard work, self-reflection and resolve — to light.

Here follows my fourth “Book View,” a short interview with an author about a book that offers an intriguing proposition.

Q: You spent a year pursuing a publisher. Why was it important to you to get this book published?

Beverly Adler: Because I always felt I would have appreciated having a book like this, a source of inspiration and something that validated my feelings, when I was diagnosed and through the years. As my fellow clinical psychologist, Dr. Wendy Satin-Rapaport, said this book is like have a support group around you.”

Q: Reading the stories of your 23 fellow contributing authors, did you see commonalities among these successful women?

BA: I did, and what amazed me was how many of their stories sounded similar to my own. Depending on the woman’s age of onset, many women experienced the “Why me?” syndrome. They pondered why they were “chosen” to have diabetes. Over time, however, they came to the conclusion, “Why not me?,” and each was able in some way to accept her diagnosis.

Q: Was there anything else these women’s stories had in common?

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BA: I noticed most of the women had a “pivotal” moment when they were able to change their attitude about diabetes from negative to positive. That then changed their actions in the direction of achieving better health. The women were able to recognize that diabetes is just a part of who they are like having green eyes or being left-handed. And many realized, while it may have felt like they were alone, they actually had the support of their family and friends.

Q: What stands in most women’s way of being successful in their lives and/or with their diabetes management?

BA: I can tell you what I see in my private practice. Many women feel so hopeless and overwhelmed by their diabetes that they give up before they even try. Many women, for instance, need to make healthier food choices, but they’ve already experienced failure dieting and their past negative experiences paralyze them from making positive changes. Usually it takes a scare like the start of retinopathy in their eyes or neuropathy in their feet to shake them up enough to redouble their efforts.

Q: Most, if not all the women’s stories in the book, refer in some way to diabetes as a ‘blessing in disguise’

BA: Yes, and that’s very much how I see it. Shortly after my diagnosis in college I realized that diabetes wasn’t fatal so I felt relieved. Today, thanks to diabetes, I take good care of myself. Thanks to diabetes I have a successful career focused on helping others with diabetes.

Q: Is there an innate characteristic that enables people to see diabetes as a ‘blessing in disguise’?

BA: I think it requires being able to look at life from the perspective that everything happens for a reason although we may not understand the reason why things happen as they do.

Q: What do you hope the book will accomplish?

BA: I hope any woman with diabetes will be able to relate to the women in these chapters and be able to use these successful women as role models in their lives, whether they are struggling with family, career or managing their diabetes. Each woman in the book shares a very intimate story about where she started and how she arrived at where she is in her life, her “lessons learned” and how she kept going and got where she is today. For all of us, our shared stories are inspirational.

I also worked hard getting this book published so that health care providers will get a better understanding of what it’s really like to live with diabetes. I hope they will also share the book with their patients as a source of inspiration.

Q: What ultimate message do you want readers to take away?

BA: None of us are perfect, but we can all do the best that we can do, and we don’t have to let diabetes control us, we can manage it. All the negative expectations that I was given when I was first diagnosed have proven to not be true. We can live long and healthy lives, we can have healthy children, we can have successful businesses, travel and participate in whatever activity we choose. Nothing — especially diabetes — has to hold us back from being the person that we want to be.

Nuggets from a few contributing authors

“It’s been 25 years since my type 1 diabetes diagnosis, and life is still built on quicksand. You never know what the next day will bring, for better or for worse, but living with diabetes has helped shape my perspective and I’m more appreciative of the joys I do have. Like my daughter, husband, and a job that I love. Being successful to me is feeling happy. I feel very, very successful.” — Kerri Sparling, Diabetes Writer and Patient Advocate at SixUntilMe, 25 years with type 1 diabetes.

“I am 71 years old and a few years ago after being told it wouldn’t work I invented a product called WarmFeet® that has helped people with diabetes improve blood flow to their feet. I don’t take “No, you can’t” for an answer, not in my professional work or my diabetes care.” — Birgitta Rice, Researcher and Educator at the University of Minnesota, Pharmacist, 52 years with diabetes

“Returning from a military tour performing for our troops in Afghanistan, I was diagnosed with type 1 diabetes. Until then, as an L.A. based professional dancer, I was living my dream. Now, my vibrant, confident self was being stripped away by a threatening and tedious “condition.” My therapy was to create something helpful for myself and others. So, frustrated by all the depressing, standard-issue diabetes tools and supplies, I started a business of fashionable diabetes accessories. My business has helped me take control of my health and rejuvenated my spirit.” — Kyrra Richards, Entrepreneur, Myabetic, 4 years with diabetes

“The secret to my success as a woman who has lived with diabetes and survived breast cancer twice, is my quest for knowledge and willingness to take action. When I found out I had diabetes, I hired a cycling coach and we formed a team with my endocrinologist. That collaboration became Team WILD. At 39 I found out I had breast cancer. Doing athletic events as a cancer survivor, I realized that we needed something similar for diabetes so I founded the “Red Riders” which is now used by the American Diabetes Association Tour de Cure bike rides! — Mari Ruddy, Team WILD, two-time breast cancer survivor, endurance athlete, 30 years with type 1 diabetes

 

Most of the contributing authors have type 1 diabetes, however, their stories inspire no matter what type of diabetes you have, or even what chronic condition you may live with. These are stories about women who encountered an obstacle and climbed the mountain.

Whether you are newly diagnosed or a veteran you’ll find hard-earned wisdom and 24 different routes to the same place: a successful life and making peace with diabetes.

A portion of the proceeds from the sale of this book will be donated on behalf of the author and the contributing writers to the American Diabetes Association. Currently the book is available through the publisher, PESI HealthCare, and will soon be available on Amazon.com.

In full disclosure, I am one of the featured women.

Originally published on Huffington Post.

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International Diabetes Federation Congress in Dubai

“Today 366 million people have diabetes. At a conservative estimate there must then be 1 billion people who either have diabetes or live with someone who does,” said Professor Jean Claude Mbanya, President of the International Diabetes Federation (IDF).

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Mbanya made his proclamation at the opening ceremony of the IDF World Congress. Almost 15,000 participants have descended upon Dubai, part of the United Arab Emirates (UAE) and where I am now, for the Congress. Researchers, scientists, heads of state, diabetes organizations, professors, medical practitioners — and several of Dubai’s royal highnesses including His Highness Sheikh Hamdan Bin Rashid Al Maktoum, Deputy Ruler of Dubai, and His Excellency Qadhi Saeed Al Murooshid from the Dubai Health Authority — are here to stem the tide of diabetes.

Why Dubai? Because here, hidden behind the towering skyscrapers, falafel, palm trees and sand, and throughout the region, Professor Mbanya told us, “one in five people has diabetes.” IDF is here to encourage governments in the region to act in the face of the diabetes epidemic.

The United Arab Emirates’ explosive urbanization, economic development and increasingly unhealthy lifestyle have catapulted type 2 diabetes in the Middle East, as well as North Africa, to pandemic proportion.

Among the staggering statistics revealed at the opening ceremony: Six of the top 10 countries with the highest incidence of diabetes are in the Middle East.

Said Mbyana in his keynote speech:

“Much of the world has been shaken from a deadly slumber. Governments have woken up at last and realized that diabetes and related NCDs (non-communicable diseases) constitute a global epidemic that requires urgent action. And they must not be allowed to go back to sleep! … Faced with an epidemic that will claim more than 4.5 million lives just in 2011, we worked with a measured urgency to mobilize our community. As a result of that action, much ground has been covered in our push for change — change so deep and far-reaching it will affect the way the world prepares itself for centuries to come. That is no mean feat, my friends! But it is one we must achieve, for we are in a race against time.

Until the conference closes Dec. 8 I’ll be writing highlights from the Congress. You can follow me on twitter at http://www.twitter/diabetesmyths.com and in pictures athttp://www.flickr.com/photos/71272098@N04/.

Originally published on Huffington Post.

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Brandy Barnes’ Community Of Women With Diabetes

In only four years Brandy Barnes has created something unique in diabetes, yet one quickly thinks, “Why didn’t someone think of this before?”

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Brandy is the founder of Diabetes Sisters (DS), a website solely devoted to supporting, educating, and advocating for, women with diabetes.

The website is only a first portal. Diabetes Sisters also makes possible face-to-face sharing opportunities, and as you’ll discover, support for women in countries where diabetes isn’t even talked about.

This is the 13th in my series of profiles on diabetes change leaders.

Q: Why did you choose to focus solely on women with diabetes?

Brandy Barnes: I was diagnosed in high school and throughout high school and college I kept looking for ‘that girlfriend with diabetes’ whom I could talk to about girl things, like what do you tell someone when you’re dating. The isolation really came crushing down on me with the birth of my daughter. I desperately wanted another women who’d been through pregnancy and could say, “No, you don’t have to worry about this or now that’s something to worry about.”

I looked on the internet, in my local community, I even asked my endocrinologist to connect me with another woman. I thought this is scary and other women must feel this way too so two years after my daughter was born I started thinking about a way to support and connect with other women with diabetes.

Q: You tell a great story about talking to God that led to the creation of Diabetes Sisters.

BB: For a few months I was praying about what I was meant to do here. I felt this internal pull like God was telling me, “I gave you all these skills and abilities and opportunities and what are you doing with them?”

At the time I was a pharmaceutical sales representative. I spent a lot of time on the road and I remember talking to myself in the car. “Please, God, just tell me what it is I’m supposed to be doing! If you tell me, I’ll do it. But I can’t do it if I don’t know what it is.”

A couple of days later driving down the road the whole idea came to me. I pulled off the Interstate and grabbed a pad and started writing down all these ideas like a weekly blog, women’s forum, shopping for women with diabetes, annual retreat. At this point I hadn’t even read a blog! The only thing I’d done on the internet was check email and visit web sites.

After I wrote everything down it was overwhelming. I thought this is way too much for me to even try to do. I had said, “If you tell me what to do I’ll do it” but I didn’t think it was going to be so huge. I stuck the pad in the back of a drawer but every day I found myself thinking how could I make this work?

I kept seeing in my mind all these women at a retreat talking and laughing, it got me so excited I knew I needed to figure out how I was going to do this. A few weeks later I took the notepad to my husband Chris and before I could finish explaining he cried, “Oh, my God, this is what you should be doing!”

Q: I’ve seen Chris at that retreat that leapt from your mind to reality, ‘Weekend for Women,’ and it’s obvious how proud he is of you

BB: He has been my biggest supporter from the very beginning. He even came up with the name “Diabetes Sisters.”

Q: Is support the key to Diabetes Sisters?

BB: I think you have to address support before you get to the other pieces we provide, education and advocacy. Being connected to others takes you to a place where you care what your blood sugars are and will do the work. Being around other women who are doing well with their diabetes you think, ah, I want to do that. You also have to feel good about yourself before you want to, or can, take care of yourself. When you feel like you’re in this disease all by yourself you don’t have much motivation to put up with everything you have to do.

Q: What’s interesting is you began online but now have taken that support into the community in women’s living rooms

BB: Yes, in 2010 we had just finished our ‘Weekend for Women’ annual conference and a number of women wanted to take something like it back to their home town. That grew into our PODS Meetups. The name came from our first group of women who piloted the program in Raleigh, NC. PODS stands for Part oDiabetes Sisters. The idea is to transcend the tired old hospital support group and move into a new arena that truly focuses on meeting women with diabetes where women gather–in someone’s living room or a local restaurant.

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Women meet once a month and let it all hang out. The first few meetings, or even the first year, it’s just a coming together to share and talk and get to know each other. Then Diabetes Sisters provides topics for the second year that the group can talk about.

Q: Are there specific topics women tend to want to talk about?

BB: Women really want to talk about relationships, about dealing with your significant other and extended family. Women want to talk about how and when do you tell a new boyfriend you have diabetes? Then there’s how do you handle people who want to be in your ‘diabetes-business’ like how do you correct family members who say, “You know if you’d just lose weight you wouldn’t have diabetes!”

A big thing that comes up at ‘Weekend for Women’ is sex. There’s little attention paid to sex for women with diabetes and really nowhere for women to talk about sexual issues so we always have a session on that at the conference. And questions about sex cross all lines. Diabetes Sisters includes women with any type of diabetes, type 1, 2, 1.5, gestational, ages twenty to eighty, and different ethnic backgrounds, and everyone has questions about sex!

Another message women need to hear from us and from each other is to put themselves first. Women want to take care of everyone else and if they have time they’ll get around to taking care of their diabetes. But you have to put yourself first so that you’ll be around to take care of your family.

Q: What do you get the most pleasure and satisfaction out of doing related to DS?

BB: Getting up every day and working on something that directly helps other women. I get chills when I think there are millions of women everywhere who need this.

I get emails from women all over the world and some of the saddest ones are from women in India. We get a lot from women there because it’s taboo to have diabetes, nobody will marry you. Women write, “I have diabetes and I haven’t told my future husband and his family doesn’t know because I know when they find out they won’t have anything to do with me. Should I tell them now or wait?” It’s so sad but at least they can go online to our web site and talk to other women in a forum, and get support and learn, because they can’t talk about their diabetes where they are.

Q: Diabetes Sisters is a nonprofit organization. Are you looking for more sponsors?

BB: Of course, always. We need sponsors for our ‘Weekend for Women’ Conference and our PODS Meetup programs. Anyone who’s interested can contact me on our web page or send me an email at director@diabetessisters.org or call our office, 919-361-2012.

Q: What’s next for Diabetes Sisters?

BB: We’re expanding our PODS Meetups to as many states and countries as possible. We’ll continue to hold our annual ‘Weekend for Women’ conference and we’ve just launched our Sister Matchprogram.

Sister Match is an online social game that helps women find other women they have the most in common with. It could be they match via their location, sharing a hobby or a similar challenge. Through playing the game, women share their stories, opinions, meet various challenges, gain mentorship, knowledge and friendship, and end up weaving an online tapestry together.

Q: Before you were diagnosed did you have a life plan?

BB: I was going to be the next Barbara Walters or the next Oprah Winfrey, and I was dead serious about that. I really enjoy meeting different people and hearing people’s stories and bringing out people’s strengths. So maybe I’m shooting for the Oprah of diabetes.

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Diabetes’ JDRF Tries Shock Ad to Push the FDA

This is not a story about statistics, yet I have to start there. It is not a story about a shocking ad that ran in the New York Times and Washington Post, yet the uproar started there.

This is the story of how approximately 150,000 people with type 1 diabetes will die, and one among them, a vibrant, healthy and lovely 17-year-old girl who did die, due to a side effect of insulin.

Insulin, which many think is a cure for type 1 diabetes, is not a cure but a medicine that lowers blood sugar. Sometimes so much, that you die. Did you know that?

This ad ran on Nov. 2 and touched off seismic aftershocks among diabetes bloggers and online advocates.

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Most who read the ad were stunned. Parents who have a child with diabetes were terrified or angered. The emotional-hit prompted many to question such an unbelievable figure: 1 in 20 people (an estimated 2-4 percent and 6 percent in patients younger than 40 years old) will perish from severe hypoglycemia.

Of the estimated 3 million people in the U.S. with type 1 diabetes, that’s approximately 150,000 people. That’s like wiping out Chattanooga, Tenn. or Rockford, Ill. — wiping them right off the map.

Aaron Kowalski, Juvenile Diabetes Research Foundation (JDRF) vice president, who’s been in charge of hypoglycemia research funding and helped launch, and still oversees, the Artificial Pancreas Project immediately responded to the uproar online.

He said JDRF ran the ad because they want the FDA to understand that tools and technologies, such as artificial pancreas technologies, exist to minimize dangerous low blood sugar; that research shows predictive algorithms can minimize hypos by up to 80 percent.

Yes, life-saving and life-changing tools are, even as you read this, being used in other countries, but not here. Take the Medtronic Veo insulin pump. It suspends insulin delivery when a person is already suffering from low blood sugar and is non-responsive. More insulin will drop their blood sugar dangerously further. The Veo has been available for more than two and a half years in over 40 countries. Yet here it is still waiting FDA approval.

Stacy Goodman Died in Her Bed

Four years ago the idea that you could die from low blood sugar became real for me. It was a chilly fall day when I took a train from Grand Central station in New York City to meet Marc Goodman. We sat across from each other in stark daylight in a quiet conference room at his company. He told me about his 17-year-old daughter, Stacy, who upon the precipice of starting her life didn’t wake up one morning.

“Stacy was diagnosed with type 1 diabetes a month shy of 4 years old,” Goodman began. “We immediately took her to the hospital where she was in intensive care for 10 days. The endocrinologist in the hospital told us how lucky we were that she had diabetes, and that it was going to be cured in three years.

“We raised Stacy to believe she could do anything as long as she did the things that were necessary to have that. When she was young we sent her to a camp for girls with juvenile diabetes. She came back so confident. Stacy played tennis and softball and she was getting ready for college.

 

“From the day she left the hospital after her diagnosis she was never back in the hospital. She knew her body, knew how to manage it and she had no complications. We were so thankful.

“It’s like there never was an event in her 13 years with diabetes and then one morning she didn’t wake up. I had seen her that Sunday and we had a great day. The next morning my ex-wife found Stacy in bed not breathing. They said she had a hypoglycemic reaction and her heart seized. They called it ‘dead in bed.’

“I had to do something to make some sense out of why someone so young and nice and intelligent, who wanted to be a doctor and find a cure for diabetes, died for no reason. I had to make Stacy’s life count, so I created the Stacy Joy Goodman Memorial Foundation. I have only two hopes. That I will be alive when there’s a cure, and that my son never gets diabetes.”

Most people who know me don’t know there’s rarely a night I go to sleep without thinking in the back of my head, Will I make it through the night? A chilling aspect of a condition most people think is about not eating candy.

Response to JDRF Ad From Diabetes Bloggers and Advocates

 

Jessica Apple, who like her husband has type 1 diabetes, wrote in her post, “This Diabetes Awareness Month Tell the World You Aren’t Equal,” ”I’ve always known the stakes are high. That’s the reason when I wake up in the middle of the night, I sometimes touch my husband’s forehead to see if there is sweat on his brow. If there is, I wake him to check his blood sugar. That’s the reason I cried when I first injected insulin into my thigh before I went to sleep. It wasn’t the pain. It was the thought of the two of us sleeping on insulin (and maybe not waking up).”

There’s rarely a night a parent of a child with diabetes sleeps without fear. Meri Schuhmacher, a mom of three boys all with type 1 diabetes said, “The world has no understanding of the daily grind and worry that accompanies us day in and day out. One of my boys was throwing up from ketones (a dangerous by-product of the body burning fat instead of glucose) last night and another’s blood sugar was 43 mg/dl at 2 a.m.” [Below 70 mg/dl is low blood sugar, below 50 mg/dl dangerously low.]

Diabetes blogger Barbra Wagstaff, also a mom of a child with diabetes wrote:

Those who have (type 1) diabetes living in their house are well aware of its dangers. We remind our loved ones to test (their blood sugar) and be in range before driving anything from a bicycle to a motor vehicle. We wake up multiple times throughout the night to test (our children’s blood sugar) and make sure that our loved ones are safe. We know that diabetes is a deadly disease.

Impassioned entrepreneur Robert Oringer, who’s constantly searching for and bringing to market innovative technologies to make life more manageable for people with diabetes — and father of two sons with type 1 diabetes — told me he has a hope and a vision. That first responders — paramedics, police officers, fire people, schoolteachers — and the world at large, understand the dangers of low blood sugar so well that anyone will know how to help someone with diabetes who’s having a low blood sugar episode.

Those of us who live with type 1 diabetes, and those of us who work as advocates, are mystified at the FDA’s slow and disengaged response to medicines, devices and technologies that can help us save our lives.

I haven’t spoken to the FDA but if someone wants to contact me, I’d love to hear from you.

Next time you see an ad for diabetes I want you to think about what you’re not seeing. The 3 million of us with type 1 who go to bed every night with a faint thought in the back of our head, “Will I wake up tomorrow?” The parents who no longer sleep soundly.

That’s why we’re anxious for a cure. And until a cure is found, we’re still waiting for the tools that will help us and everyone we know with type 1 diabetes not be “1 in 20.”

Originally published on Huffington Post.

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The 14-Minute Exercise That Can Save Thousands of Lives — Including Yours

I’m calling everyone with diabetes — and I’m asking you to call everyone you know — to do something between now and Nov. 14: World Diabetes Day.

By doing what I ask you may save your own life, and together, we’ll be saving the lives of thousands of people in need. Young and old, in the U.S. and Latin America, 14 minutes of exercise will get diabetes medicine and other life-saving diabetes supplies to people in need.

Here’s the Premise

Exercise helps manage blood sugar and diabetes. You’ve heard it again and again. Now hear this: Ph.D. Linda Bacon, nutrition professor at the City College of San Francisco, said when talking about heart disease, it’s much more likely that being sedentary, not being fat, is the real problem. A 2008 study, done by Harvard researchers, looked into the effects of physical activity and body mass index on coronary heart disease and found that overweight women who walked more than four hours a week had a significantly lower risk of heart disease than those who didn’t exercise.

You’ve probably also heard two out of three people with diabetes die from stroke or heart disease. But still you may have found it hard to get motivated to add some movement into your day.

But what if you saw that just a few minutes of activity can help you manage your blood sugar? You can by doing the Diabetes Hands Foundation’s Big Blue Test. In just 14 minutes you’ll see how much any activity you choose (walk, garden, bicycle, chase the cat) lowers your blood sugar. That might just get you off the couch, and, you’ll be getting life-saving diabetes supplies to thousands who without them may die.

If you’re already active, you know the benefits of exercise. Participate in the test because your participation will mean more supplies to more people; each Big Blue Test equals a life-saving donation. Be part of the movement and have everyone else you know with diabetes be part of the movement: Diabetes Hands Foundation is trying to reach 8,000 people to do the test so 8,000 people will get life-saving supplies.

How to do the Big Blue Test:

1. Watch the short video below and get inspired

2. Test your blood sugar, be active for 14 minutes, test your blood sugar again. (Do this between now and Nov. 14.)

3. Record your blood sugar results at BigBlueTest.org by midnight Nov. 14.

 YouTube Preview Image

Here’s the Promise:

Every time someone participates in the Big Blue Test and shares their blood sugar results on the website Roche Diabetes Care, the makers of ACCU-CHEK, is making a donation to provide life-saving diabetes supplies to someone in need.

Last year’s Big Blue Test raised $75,000 as a donation from Roche Diabetes Care that funded the International Diabetes Federation’s Life for a Child program and Insulin for Life. This year five nonprofit organizations in underserved areas in the U.S., including Alabama and New Mexico, and Life for a Child Latin America will receive donations.

If you participated last year this year something’s different. The donation is not tied to views of the video but you doing the Test and recording your results. We want you to actually see the power of exercise to help you manage your blood sugar, so you can live a healthier, fuller life with diabetes.

Here’s the Plea:

Pass this post on so more people with diabetes can see how movement can help them manage their blood sugar and to help increase the donation. How many lives can yours save in just 14 minutes?

Here’s the Point:

Wouldn’t you like to see for yourself how a little activity can help control your blood sugar? 
Wouldn’t you like to save thousands of lives? 
Wouldn’t you like to do both in just 14 minutes?

Whether you’re currently a coach potato just waiting to unleash your potential, an everyday athlete or Ironman triathlon winner — be part of the movement. Do the Big Blue Test. Do it for your sake. For your family’s sake. For 8,000 families’ sakes.

Here’s the Punchline:

It’s up to you to create a healthy life with diabetes. Now see for yourself how exercise can help you do that. Do the Big Blue Test and save thousands of lives, one of them may be your own.

Originally published on Huffington Post.

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The Woman Who Raised a Diabetes Hero : An Interview With Phil Southerland’s Mother

My last interview featured Phil Southerland, founder of Team Type 1 and the youngest person ever to get Type 1 diabetes and still be living. Now meet the indomitable woman who raised him, Joanna Southerland.

This is the 11th in my series of profiles on diabetes change leaders — and the first with one’s mother.

(Joanna and Phil Southerland)

(Joanna and Phil Southerland)

Q: What are your most vivid memories of 28 years ago, when your seven month old infant was diagnosed with Type 1 diabetes?

Joanna Southerland: I was taking Phil to doctors all week long because he’d lost weight and his diapers were always soaked. All I heard was, “He’s teething, there’s nothing wrong with him.” Finally, I took him to a doctor on a Saturday because he was barely breathing. The doctor said, “Oh, he’s just got the flu,” but I knew better.

He’d lost eight pounds in three days. Phil has incredibly blue eyes, and he began climbing up the side of my back in his little yellow jumpsuit, and his eyes were grey. I said to the doctor, “I don’t care what you say, I’m taking him to the emergency room right now!”

As soon as we got there a nurse picked him up and remarked that his breath was fruity. But the doctors didn’t listen, and because Phil was only 14 pounds and barely hanging in my arms, they put him on a glucose IV. The IV was heading him right into ketoacidosis. He could have died.

Finally they took Phil off the IV and the doctor said, “I have good news and bad news. Your son is going to live, but your life’s going to change. He has Type 1 diabetes, and you’re going to have to give him insulin.”

Q: One of the biggest fears with Type 1 diabetes is low blood sugar. How did you deal with that with an infant?

JS: After Phil was stabilized, he was put in the pediatric intensive care. One day he turned green in my arms and a nurse, whose brother has Type 1, got in my face (in a good way) and said, “Welcome to the life of a diabetic. This is hypoglycemia and you’re going to have to get used to it!”

I was on guard every moment from then on. When Phil was low as an infant, I would give him orange juice and tell him what I was doing. I’d say, “I’m giving you orange juice because your blood sugar’s low.” Once when he was 13 months, I was sitting in a chair and he came up to me and said, “Orange juice, orange juice, low.”

Things always seemed to happen that gave me a sign to fight on. At one point I went to a diabetes support group looking for information, and the woman who ran it was a ‘poor pitiful me’ kind of person. She made out like she couldn’t do anything because of her diabetes. I also met another girl there who’d had Type 1 for five years and was going blind. I was out of my mind for about two months after that.

Then one day, in a supermarket I don’t usually go to, I ended up on the check out line behind this girl and her mother. I felt like the power of god had directed me there. In their cart was all this junk food. I decided then and there that my son would not eat like that, and these womens’ fate would not be his.

Q: Given that you had an infant with a disease that needed intense management, and your husband had a drinking problem, how did you manage?

JS: I always looked at it like it could be worse. Phil could have gotten a disease that might have killed him. Granted it wasn’t much fun when I had to wring out his diapers and stick a urine test stick in the liquid to see what his blood sugar was. But I made a choice that I was going to fight this and do whatever I had to do.

My ex-husband smoked and drank and the marriage had been bad for years, so with Phil’s diagnosis I made the decision that he had to go. I wasn’t going to have that stress and those influences in my house.

I remember sitting in my closet about two months after Phil’s diagnosis. I was very overweight because I got heavy during pregnancy and hadn’t lost the weight. I was sad about my weight, and sad my son had diabetes, and I was sitting in my closet stuffing potato chips in my mouth for solace. I had my hand half way up to my mouth and I thought, “You’ve gotta stop this right this minute because Phil can’t eat like this!” That day I stopped. I started exercising every day and I haven’t stopped since. I thought, if my kids are going to eat right and exercise, I have to too. Shortly after I changed to eating an almost vegetarian diet.

Q: You also tested Phil’s blood sugar a lot to manage Phil’s diabetes didn’t you?

JS: I saw early on that Phil needed to move all the time and that exercise was beneficial for him, so I kept him involved in any activity I could from an early age. People say that took a lot of courage. What it took was a lot of testing his blood sugar. He grew up knowing that you can do anything, but you’ve got to keep your blood sugar in control.

Of course, for about two years after he was diagnosed, I took him everywhere for someone to tell me his diabetes was a mistake. One day one doctor said to me, “You’ve got to treat this, the shots, the testing, like brushing his teeth.” So I began treating everything like brushing your teeth, exercise, eating, insulin, it was just what we did every day.

I teach exercise at Florida State University and I tell my students, the twenty-somethings and the seniors, exercise is like brushing your teeth. You take care of your teeth, you take care of your body.

Q: Do you feel you lost anything because of Phil’s diabetes?

JS: No. I certainly wish my son never had a disease, but he has impacted so many lives. When he was small I would run to the mailbox to get Diabetes Forecast magazine and see who had Type 1 diabetes and what could I learn. There were very few stories. Then almost 27 years later to the day of his diagnosis, Phil was on the cover of Diabetes Forecast. I can be a hard-ass, but I shut my office door and sat down and cried.

When you first get the diagnosis, you’re mad as hell and keep asking why? Why not me? Why my child? Why god? Anybody who has anything happen like this asks that. But 27 years later, he was doing something for people that I desperately needed as a young mother. That day I was overwhelmed with incredible sadness, but also incredible pride. In his entire growing up, he never felt sorry for himself, not one single day.

Q: What advice would you give parents who have children with diabetes?

JS: I think the most important thing is that you can’t feel sorry for yourself; and don’t let your kids know you feel sorry for them. If you need to cry, you need to cry alone or with your friends. I had a wonderful group of friends and wasn’t afraid to explain the disease to them or ask for help. When my friends saw I was on the breaking point, they were right there for me. Type 1 diabetes is 24/7. It isn’t a disease you can manage alone. Get connected to others online if there’s no one in your circle. I’m always connecting diabetes families that I meet online.

Q: Were there lessons for you in Phil having diabetes?

JS: Yes. If you think you’re right about something, trust yourself. If I had believed the doctors who told me Phil just had the flu, I would have kept him home and he would have died. I had this internal feeling that there was something wrong and I trusted enough in myself to believe I was right.

And never give up hope. Be relentless in trying to do the best you can in a bad situation. Martial all your internal resources. This has taught me that out of the worst possible circumstances can come the best. You can’t let bad things get you down because you don’t know what the outcome’s going to be. If anyone had told me 28 years ago when Phil was diagnosed that this would be the outcome, I would have thought they were nuts.

I look back at my life and can say Phil’s been a role model for me. He has found his purpose in life: To avail himself and all his team members to let the world know that Type 1 isn’t a death sentence. Maybe mine was to keep him alive.

Originally published on Huffington Post.

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