Roberta’s Story

What led Roberta Ruggiero to found the Hypoglycemia Support Foundation?  Why has she devoted four decades of selfless service to the HSF?  Wolfram Alderson, CEO for the HSF, interviews Roberta and provides a brief but powerful look into her past, present and future.

WOLFRAM

Roberta, you founded the Hypoglycemia Support Foundation under some rather unusual circumstances. Please describe what happened.

The term “patient advocacy” hadn’t even been invented yet back then. Would you please tell the story? Please share the year and the setting. It may be hard for some to understand today how such events could transpire today.

ROBERTA

The biggest and most exciting year of my life was 1960; I graduated from high school, got engaged, got married and then planned on having a baby!  I was just eighteen years old, had attended a special novitiate high school to become a nun when very unexpectedly I met a tall, dark handsome man in an Air Force Uniform. He swept me off my feet and my plans changed drastically.  Because I had no commercial or business training, just academic and religious, getting a job in the outside world was a challenge.  Thus, starting a family seemed like the best answer for us.  I became pregnant within a few months of us being married.  I picked the name of a doctor out of the Yellow Pages, never knowing the difference between a doctor and a GYN or pregnancy expert.  So, it was no surprise that every time I went to him and told him how much I was gaining, he said, don’t worry! I didn’t follow any diet and just ate what I always ate but doubled it! Lots of pasta, bread and my favorite: hot fudge Sundays. I gained over 50 pounds! I never dreamt that my actions during my pregnancy would haunt me for years to come!

My daughter was born in November of 1961.  I was beyond excited and couldn’t wait for all of us to come home to the small apartment my husband and I had prepared. I believe it started slowly! My excitement began to fade and give way to sadness, then tears. The emotional roller-coaster that would soon follow began to escalate and was now combined with head pains.  They started out inconspicuously and then were full blown pounding headaches, followed be severe fatigue insomnia and crying spells. I wasn’t sure if these symptoms were the result or the cause of my depression. In 1963, my son was born and every symptom I had intensified. By now I was already on Valium.  My family physician said it had to be “after-baby blues” (postpartum depression).  However, he did start a series of tests because my head pain had become unbearable.  I had an electroencephalogram, spinal tap, and extensive blood work, and it all came back negative.  More medication was prescribed. This scenario lasted 5 years.  It was at this time that my physician said since there is nothing physically wrong, it had to be mental/emotional.  He suggested I see a psychiatrist. Fearful and ashamed, I went to my first one, practically sneaking in to his office so that no one would see me.  He said I probably got married too young, had children too soon, etc.  He increased the doses of my medication and added more. After months of not feeling better and getting worse, I went to another psychiatrist.  His diagnosis wasn’t any different.  I don’t remember how or why but I got to a third.  After sharing my story and the experience I had with all the medical specialists I was seeing, he looked over my case history. It was now 1968—my illness started in 1961.  The new doctor had an answer.  He said there were treatments that he felt could help me. I heard nothing he said after that. At this point I would do anything. I said yes, I’ll do it, take it. I was desperate!  This all happened during a time when the patient believed in everything the doctor would say–we put them on a pedestal and asked no questions!

I remember the morning we left for the hospital like it was yesterday! We drove up to the hospital, got out, went up the stairs and into the entrance lobby.  I kissed my husband Tony and said goodbye…see you soon!  I remember going up an elevator, then seeing windows with bars on them.  Then the voices, and screams!  I was rushed into a room and told to strip down and take all my clothes off and put on a hospital gown.  They also wanted my wedding ring and the Miraculous Medal of Mary that I always wore around my neck.  This is when panic started to creep in. What’s going on?

I found out soon enough when I saw a long sitting bench and patients not only sitting there but leaning, crying and some screaming–they were writhing back and forth. Some patients were walking around, some trying to get the attention of the other nurses. Fear must have gotten to me because the next thing I remember is being put on a stretcher or hospital bed. Several nurses helped to get me on it and straighten out my body. They strapped down my arms, hands and feet.  Then things moved fast.  Something was being attached to my head.  Lights, there were lights all around. Why?  I felt and heard several people behind me, I couldn’t see them but assumed they were doctors or a doctor and a nurse. I saw a machine. What’s that for?  They started putting something in my arm.  Then the most frightening of it all, they reached for my tongue!!  Then the lights went out. My life was never the same!

WOLFRAM

People don’t realize that electroconvulsive therapy is more firmly established than ever as a method of treating certain severe forms of depression. Why or why not is this a good thing? Has the technology become safer than the past? Most us are only familiar with the horror stories, like your own.

ROBERTA

When I got home from the hospital I was full of shame, guilt, humiliation and the sense of degradation which accompanies electric shock treatments. It’s the erosion of the heart and soul, the body and above all, the mind. ECT is now administered more than ever.  I wish that legislation would be passed to have a patient tested for nutritional and or chemical imbalances, including hypoglycemia, before such measures are taken. It’s time the food/mood connection is taken seriously. If ECT is good, safe and the horror stories are not as bad as people think…then why is there such secrecy surrounding it?  Doctors and even patients don’t talk about it even though the number of patients receiving it is higher than ever!

WOLFRAM

Aside from the specific technology of shock treatment, a powerful lesson from your story appears to be that medicine has been hyper-focused on treating symptoms of disease with drugs, procedures, and devices. Dr. Robert Lustig says that while these strategies may serve some short term (tactical) purposes, they are not the cure – they don’t address the systemic cause. He emphatically states that the way to reverse or eliminate most metabolic disorders, such as hypoglycemia, is to fix the diet, starting with reducing or eliminating processed foods, added sugar, etc.  How did you make the connection with food as being a source of your health and well-being and what have you done about it? What is your “secret sauce” as they say?

ROBERTA

I didn’t on my own, not at first.  After the last doctor I went to, the one that finally diagnosed me with a glucose tolerance test, the first thing he asked me is “What do you eat?”  I had to think!  Then I realized that I don’t eat!  I had two small children, fifteen months apart, and I was sick since they were born.  My husband Tony had to go to work, our medical bills were pilling high.  I managed to feed my children but I skipped breakfast, most of the time I skipped lunch too. Then, around 3 pm my mom or mother–in-law would bring over some kind of pasta, loaves of bread and dessert…usually hot apple pie.

After telling me that I had a severe case of functional hypoglycemia, my doctor promised me that my symptoms would go away if I changed my diet!  I thought he was crazy!  He’s telling me that a simple diet change would cure my headaches, sever fatigue, depression, etc. No way, I thought!

I was given a sheet of paper with some foods to eat and some to avoid.  That wasn’t enough for me. I then bought a few books on the subject, one by Dr. Robert Atkins and one by Dr. Carlton Fredericks–they saved me.  But it was a long and challenging journey. While trying to figure out what to eat and not eat, the bigger challenge for me was getting off all the medications I was on.  Then reading about the importance of vitamins and exercise to stabilize blood sugar, which confused me. I didn’t know where to start with vitamins other than a multi-vitamin I was taking.  And as far as exercise went, raised in Brooklyn NY, all I did was skating, jump rope, hide and seek–nothing a mother of two would do. What I thought would take me months to conquer, took years. I longed for someone I could speak with, someone who understood my fears and frustrations. I wanted a support group for people with hypoglycemia!

WOLFRAM

You had no experience founding a nonprofit back in 1980. How did you pull it off, and then maintain the organization over the last four decades?

ROBERTA

I was a make-up artist and volunteered my services to our local community theater for almost five years. The cast, directors and crew became family. I loved them.  When it became clear that I was ready to start a support group for people with hypoglycemia, I turned to them. They helped me with bylaws, articles of incorporation, an accountant and a lawyer.  And so, in June, 1980, we were incorporated as The Hypoglycemia Research Foundation, Inc.  In December, 1991, we changed our name to The Hypoglycemia Support Foundation, Inc. and we just celebrated our 37^th anniversary!

I started having support group meetings in my home town of Cooper City Florida–that lasted for almost fifteen years before we branched out to other areas of Broward County. I formed a Board of Directors and Advisors and sought out the direction and support of some of the best and renown doctors in the holistic health and medical fields.  Dr. Emanual Cheraskin, author of the Vitamin C Connection, Dr. Harvey Ross, author of Hypoglycemia: The Disease Your Doctor Won’t Treat, Dr. Lenden Smith, Dr. Carlton Fredericks, Dr. Robert Atkins and of course Dr. Wayne Dyer!

I was also fortunate to have Dr. Doulas M. Baird and Dr. Lorna Walker, both experts in the field of hypoglycemia to join the HSF. They taught me everything I know about low blood sugar!

In 2000, I launched www.hypoglycemia.org and then used this avenue of communication to bring information, support and encouragement to those suffering from this insidious disease, hypoglycemia. Our education efforts eventually reached millions.

All of this work was not easy; there were times I wanted to quit.  It took sheer determination, persistence and faith–this was something I had to do.  I remember a very special someone in my life said “You didn’t choose it, IT chose you!”   I couldn’t walk away!

WOLFRAM

The list of your accomplishments in the HSF Strategic Plan are impressive. What were some of your biggest challenges? Please highlight some of the accomplishments you are most proud of.

ROBERTA

The biggest challenge was raising funds. We tried everything, carwashes, putting on a play/musical, raffles, campaign letters, seeking corporate funding. When I realized that could be a full-time job, I started funding the HSF myself.  The fact that I kept my overhead low was in my favor.

I made a home office; I asked family and friends for help in reducing their services or donating them altogether. My husband Tony was in the printing business so we got a big discount on our printing needs.  Every bit helped; and we survived. And, we did without! I remember going several times a week (and sometimes everyday) to our local 7/11 to make copies of important papers and documents I had to copy and send. We just couldn’t afford a copy machine! When we finally got one, I cried!

In 2010, the HSF was growing, and so were our financial obligations and responsibilities. At this time, we looked into professional fundraising. This resulted in putting on five HSF Fundraising Galas. In 2016, I had to put the Galas on hold brought the work of the HSF to a slow crawl in order to take care of my very sick husband. This was the most difficult time for me.  My first love and responsibility was taking care of the man I had spent my entire life with–56 years! I was torn because I also did not want to give up the HSF. I stopped writing my monthly blogs, but was able to answer some e-mails and phone calls, especially when they pertained to children. I also kept up with HSF’s Facebook page, when I was able to. These were the darkest days of my life!

Little did I know that a miracle was brewing behind the scenes—and it included two amazing human beings, Wolfram Alderson and Leslie Lee Sutton! They were to save me and the HSF!

I am most proud of my book, The Do’s and Don’ts of Hypoglycemia: An Everyday Guide to Low Blood Sugar. I just finished the fifth edition and it will be available in September 2017.  I have thousands of letters and e-mails that I’ve received over the years telling me how much the book helped them or saved their lives. This is what it’s all about: sharing my story, my book, my website…to give hope to everyone that is suffering from this most confusing, complicated, too often misdiagnosed and misunderstood disease!  People must know they are not alone; that you can control hypoglycemia symptoms before they control you!

I want readers to know that YOU CAN DO IT!!  No matter what obstacle comes your way, if you have faith, hope and trust in God, anything and everything is possible!

I could hardly write a sentence, let alone a paragraph on health and nutrition when I started writing my book back in 1985. However, I knew I had a story and a message that was compelling to share…that could save lives!  Sheer persistence and determination overcame my 65 book rejections!!!

Then one day, I was invited to a party.  While there I told the host, a friend of mine, about my rejections and asked: “Should I continue?”  He immediately introduced me to Don Lessne, the publisher and owner of Frederick Fell Publishers in Hollywood, Florida.  I casually told him my idea and he said: “That’s just what I need, send me your book!”  The rest is history!

WOLFRAM

A typical response to a low blood sugar incident or acute hypoglycemia is to consume a food or beverage high in sugar. Isn’t this paradoxical to solving the problem? Why are so many confused about low blood sugar and how to treat it (cure it, versus just attacking acute symptoms)?

ROBERTA

The patient is confused because they aren’t getting the appropriate information and instructions from their doctor on how to stabilize or control their hypoglycemia symptoms. If you’re lucky to get diagnosed, you may get one sheet of instructions.  They don’t know any better because they are not told or taught about hypoglycemia in medical school. Exacerbating the problem is that only 30% of medical schools even require a course in nutrition! In 1960, the AMA did a turnabout and declared hypoglycemia a non-disease! Half of the correspondence I get is from frustrated patients who say their doctor doesn’t believe hypoglycemia exists! I’ve also been told, over and over again, “my doctor says just eat more sugar!”

I’m excited to say this is changing with functional medicine and holistic health care providers now recognizing and treating hypoglycemia. Chiropractors, nutritionists, doctors and other health care specialists are opening their minds to the food/mood/health connection. Dental disease and hypoglycemia are new being understood to be “canaries in the coal mine” of metabolic disease. Understanding hypoglycemia in the context of overall metabolic health is key.

WOLFRAM

You recently partnered with the Institute for Responsible Nutrition to conduct a national questionnaire on hypoglycemia. What have you learned? What insights have confirmed what you already knew, and what new understandings resulted from the questionnaire? Were there any surprises?

ROBERTA

First of all, I felt very honored and privileged to have both The Hypoglycemia Support Foundation, Inc.  and the Institute for Responsible Nutrition conduct an online questionnaire targeting individuals who experience hypoglycemia. Leslie Lee, who is now one our HSF Medical Advisors, played a major role in designing and evaluating this questionnaire, and I am very excited about the results and the conclusions that she helped us deduce from the questionnaire results.

The purpose of our questionnaire was to characterize experiences with hypoglycemia and the diagnostic process and to see if we could observe a connection between reactive hypoglycemia and the development of type 2 diabetes later on. Legitimizing the condition within the medical community is important, because so many people express to us that their health care providers do not understand or even believe what they’re going through.

We learned quite a few interesting things from our now 1500 respondents. First, about two-thirds of our respondents knowthey have experienced hypoglycemia, but only about half of respondents have been diagnosed by a physician and only about one-third have been diagnosed with an oral glucose tolerance test, the gold standard diagnostic tool. There’s a disconnect there—so many people know they experience it and yet they aren’t being diagnosed.

WOLFRAM

What’s going on there? Why do the patients seem to know that something is going on, but their physicians do not?

ROBERTA

Maybe it’s difficult to diagnose, or maybe physicians just aren’t taking it seriously enough.

Second, about one-third of respondents’ experience hypoglycemia at least once a week while another one-third experience it at least once a day. That’s too frequently! Imagine the impact on their qualities of life! This is a clear indicate that people who experience hypoglycemia don’t know how to prevent it from happening! That’s a problem and an educational opportunity.

WOLFRAM

What foods trigger hypoglycemia?

ROBERTA

We received mostly predictable answers—starches, sweets, soda, caffeinated beverages, alcohol, and so on. But what was most surprising was that 11% indicated that diet beverages—which provide no calories, no sugar, and no glucose—are a trigger of their hypoglycemia.

WOLFRAM

How could this be?

ROBERTA

We know diet sweeteners are associated with increased risk of developing obesity, metabolic syndrome, and type 2 diabetes. Perhaps diet sweeteners can trigger hypoglycemia through the same mechanisms as their other metabolic implications? We need more research in this field. Diet sweeteners have historically been presumed to be metabolically inert, but it’s looking like they aren’t.

WOLFRAM

What do your respondents typically do when they experience hypoglycemia? How do they treat it?

ROBERTA

Well, only 12% are “following the rule” and using the American Diabetes Association’s recommendation of eating 15 grams of fast-acting carbohydrate, resting for 15 minutes, then checking blood glucose and repeating if necessary. More than twice that many (27%) are eating indiscriminately—they’re eating whatever is handy in whatever quantity they want. About 30% are eating sweets like candy or dessert and another 30% are eating slow carbs, like nuts, seeds, and whole grains.

WOLFRAM

Why is this important?

ROBERTA

There’s a fine line between treating hypoglycemia now and triggering another episode of reactive hypoglycemia later. If you treat hypoglycemia with rapidly-absorbing starch or sugar, and you eat a large quantity of it, because your body is desperate for energy, your blood glucose may spike too high in response. That blood glucose bolus may spike your insulin too high, which may result in hypoglycemia again shortly thereafter. It creates a vicious cycle! The treatment leads to the problem, and the problem necessitates the treatment! If people were more strategic with their treatment, they may be able to treat hypoglycemia without inducing another episode. Again, this elucidates another knowledge deficit and educational opportunity.

WOLFRAM

What did you learn about reactive hypoglycemia preceding the development of type 2 diabetes?

ROBERTA

This is where it really gets interesting! Of those who took our questionnaire and who have been diagnosed with type 2 diabetes or pre-diabetes, 68%–a whopping two-thirds—experienced reactive hypoglycemia before their diagnosis!

WOLFRAM

Hypoglycemia is often thought of as “the opposite of diabetes,” and patients are often informed they do not need to worry about developing diabetes. “Just eat some sugar” is common dietary advice given to people who suffer from hypoglycemia.

ROBERTA

Our questionnaire responses beg us to examine whether reactive hypoglycemia is an example of metabolic dysfunction that, if continued undiagnosed or and mis-diagnosed, could develop into insulin resistance and then type 2 diabetes over time. We need to be thinking of reactive hypoglycemia as a red flag that type 2 diabetes may develop if the diet isn’t modified now. Think how much damage the advice to “just eat more sugar” could do to someone on the verge of developing diabetes! That message alone could be the tipping point toward diabetes for that patient. Most people (85%) who experienced hypoglycemia prior to a diagnosis of type 2 diabetes or pre-diabetes, experienced it for an extended period of time—at least 2 years. Think of all the positive change they could have made in their diet during that period if they had only been informed.

WOLFRAM

I know from personal experience that it is often very challenging when presenting symptoms of metabolic disorder, like low blood sugar, to health care providers. Conditions like hypoglycemia are poorly understood and most doctors have little understanding of diet-related diseases. In fact, only 30% of medical schools in the U.S. even require doctors to take a nutrition course! How did respondents describe the patient experience?

ROBERTA

We knew patients are frustrated, but we didn’t know the degree to which they are frustrated…until now! Only 40% feel as if they understand the condition well enough to satisfactorily manage their symptoms. And it’s amazing that that figure is as high as it is, because only 17% believe their health care team understands their condition! Further, only one in four feels like their condition is taken seriously by their health care team. That’s sad. We can and should do better for the patient.

WOLFRAM

Where this is misery, there is also opportunity. Did the questionnaire reveal any areas where the HSF can make a difference?

ROBERTA

Opportunities abound. If clinicians understand hypoglycemia better, they can educate patients to think of it as a red flag that diabetes could develop. By providing a little information and diet education (and NOT providing counterproductive information), we have the potential to prevent type 2 diabetes in this population. What a blessing! An early red flag that, if we notice it, can inform our behavior and prevent disease!  How empowering! The HSF is developing high quality educational programs for health care professionals that provide CME (Continuing Medical Education) credit.

WOLFRAM

Is the questionnaire still ongoing?

ROBERTA

To continue this study for future references, the questionnaire remains open for responses. If you would like to participate, you can access it by visiting www.hypoglycemia.org and clicking on “Take our Hypoglycemia Questionnaire.” Questionnaire results are posted on the HSF website (https://hypoglycemia.org/learn-about-hypoglycemia/questionnaire/).

WOLFRAM

You wrote a book that is going to be re-released in September in a 5^th (revised and updated) edition. What challenges did you have to overcome about writing a book about a complex medical issue? You don’t have a medical or science background. Please describe what education and experience prepared you to write the book, the challenges involved in writing it, what motivated you to write the book, etc.

ROBERTA

Wolfram, you just hit a nerve!  I was so frightened to write a book about a medical condition with no medical degree and writing about a condition the medical community labelled a non-disease. Even those who did recognize its existence, still called hypoglycemia the most confusing, complicated, too often misdiagnosed and misunderstood condition of the 20^thcentury.

So, no, I didn’t have a degree but I lived my story and I wanted to share it.  I couldn’t believe I went through hell for no apparent reason. If I could save just one life, it would be worth it!

And after going through thousands of letters and emails (currently more than 400 month), I realized that I had something to offer that no one else was providing. I knew from my personal experiences and from all these messages from people pouring their hearts out, that hypoglycemia is terribly misunderstood, misdiagnosed, and poorly treated. I knew what they needed and wanted–and that they were not getting it from the medical community.  I had no choice but to write about it and do something about it!

WOLFRAM

What advice can you give to others who might be considering a role as a patient advocate? What gave/gives you the right or authority to stand up and to be heard? While today, it may be true that doctors are encouraged to listen to their patients, when you founded the HSF, this was not the case – quite the opposite. Please describe how this dynamic has changed over the years. For example, you are now recognized by some of the leading doctors and health professionals.

ROBERTA

It is still mixed after all these years.  Yes, the HSF and I have come a long way and I’m proud to say that we’re recognized, appreciated and accepted more than ever.  But we still have such a long way to go.  I get e-mails from doctors, endocrinologist who want my information, I send them free books, brochures, etc., and rarely get a thank you. I have to admit that sometimes makes me question what my work is worth!  If I reach a low point, I count my blessings and look to our amazing group of HSF Medical Advisors, and my newest supporters, including world renown neuroendocrinologist Dr. Robert Lustig, U.K. Cardiologist Dr. Aseem Malhotra, Pediatric Gastroenterologist Dr. Uma Pisharody… and Registered Dietitian Leslie Lee Sutton. Each of these leaders are inspirations and have amazing stories – they are my champions!

WOLFRAM

In 2020, the HSF will be celebrating its 40^th anniversary. What is the HSF planning in the next few years leading up to this big moment in your organizational history?

ROBERTA

I’m feeling blessed to have you, Wolfram, as the HSF’s new CEO. Together we’ll take the HSF to heights we’ve only dreamed of! We’ve gotten the message out about our current focus and work to the hypoglycemia community, their family and friends.  We have a new Strategic Plan that gives some clues to exciting developments in our future. In order to get the HSF message to where it can make a difference, we are developing some exciting programs that provide education to health professionals – for example, we’re involved in developing model CME (Continuing Medical Education) educational summits focusing on Metabolic Health and Nutrition Summits at Swedish Hospital in Seattle.  The next big thing will be Patient Medical Education – serious, science based education for patients that move beyond simply managing metabolic disorders like hypoglycemia, and focus on reversing and preventing metabolic dysfunction.

WOLFRAM

You were obviously decades ahead of others in gaining insight that this health issue is like a “canary in a coal mine?”  Are you surprised that hypoglycemia is more of a problem today than it ever was?

ROBERTA

No, sadly, I am not. I am so aware of the culprits that surround us—sugar and highly processed foods being the biggest and the most deadly!  All I have to do is go to one of the malls in my community and I see what the kids are eating and drinking. One can’t really blame the parents or the children; they are surrounded by sugar and processed foods, and it’s hard to resist–once it has a hold on you, you’re in for the fight of your life!

That’s why I admire the work of Dr. Robert Lustig, he’s going right to the source to fight this battle…the food industry!    His new book, coming out September 2017, called Hacking the American Mind, is going to expose the industry even more and explain the science of how the food industry designs foods in chemistry laboratories, specifically with intention of manipulating our bodies and minds.

WOLFRAM

Over 40 years ago, Dr. Seale Harris said “Low blood sugar is the diabetes of tomorrow.” As of the year 2000, one in three children will have diabetes. This news can be paralyzing.  What is the good news? Why should we be hopeful that things are changing? What is the light at the end of the tunnel?

ROBERTA

The good news is that you, Dr. Lustig, Dr. Pisharody, Leslie Lee and the incredible Board of Directors, Medical Advisors, Advisors, volunteers and the HSF community are coming together as a team like never before! The Strategic Plan we put together is really exciting!  We’re establishing partnerships in Seattle, LA, NY and my home town in South Florida. We are reaching out to amazing health professionals and leaders at hospitals, universities, schools and drug and rehab centers around the U.S. and even other countries.  Anytime we have a room full of people, and pose the question “how many have been affected by low-blood sugar incidents?” – most of the audience raises their hands. We know that hypoglycemia / low blood sugar/ metabolic disease is affecting millions!  We are hopeful that our educational programs and partnerships will have powerful and lasting results. We can change the shocking statistics on diet-related disease!

I see a light at the end of the tunnel and it’s as bright as ever!