Adolescence, Stigma, and Owning Diabetes

This content originally appeared on diaTribe. Republished with permission.

By Katie Bacon

Katie Bacon is a writer and editor based in Boston. Her daughter was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie’s writing about diabetes has appeared on TheAtlantic.com and ASweetLife. Katie has also written for The New York Times, The Boston Globe, and other publications.

Adolescence can be a confusing time, and this is doubly true for teenagers with type 1 diabetes. At a stage when everyone is starting to figure out who they are, the teenager with type 1 must also decide how much they want diabetes to be a part of their identity. Katie Bacon, the mother of a teenager with type 1, spoke with a range of experts and peers who shared their expertise and experiences on this subject.

Our daughter was diagnosed with type 1 diabetes at six years old, just before she started first grade. At the time, it was important both from a safety perspective and from an emotional one that the people around her knew about her diagnosis. Along with her teachers and the school nurse, we let all her friends and their parents know, and they rallied around us to support her. She quickly owned having type 1. It became an important and immutable part of her identity, one she was proud to share with others.

Fast forward eight years to this past fall, when she was doing orientation for her new high school. After being surrounded by a group of familiar and supportive friends from kindergarten through eighth grade, here she knew almost no one. Not to mention that, in the era of COVID-19 – with masks, cohorts, and strict rules about socializing – it would be much harder to meet people.

During orientation she was asked to create a timeline of important moments in her life. While chatting about what she might write, I asked if she was going to include her diagnosis. Her response seemed to come completely out of left field: “Why would I put that down? I’m not planning on telling anyone unless I become really close friends with them.”

She made it clear that she was now much less willing to acknowledge having type 1 as she entered high school. Although she didn’t express it quite this way, it seemed that the reason stemmed from a desire to avoid being judged or stigmatized – she didn’t want to be known as the new girl with diabetes. So, we agreed that we would tell the school nurse, her teachers, and her sports coaches – for her health and safety, it was non-negotiable that they all know. We also agreed that it would be up to her to choose when (and if) she would tell her friends.

Still, it felt like my daughter was cutting away her safety net. I wanted to know if this shifting perspective on her condition was typical for teenagers, and I wanted some advice on how to help her through it. I reached out to Rachel Rifkin, a longtime friend who was diagnosed with type 1 at age ten; to Dr. Ananta Addala, a pediatric endocrinologist at Stanford Children’s Health; and to Dr. Persis Commissariat, a pediatric psychologist at Joslin Diabetes Center who also has type 1. Through their expertise and experiences, they helped answer my questions about disclosing teenage diabetes versus hiding it; about stigma, perceived stigma, and how to deal with it; and about how to let go a little bit while still giving our daughter support through this process.

One of the crucial parts of adolescence is identity development, when teenagers figure out who they are in relation to their family and their peers. At this developmental stage, people are particularly sensitive to being different in any way; and if they are different, they want it to be in ways that they’ve chosen. All of this is complicated, of course, by having a chronic disease that requires frequent visible action and identifiable devices to manage (insulin shots, continuous glucose monitors or CGM, insulin pumps, etc.).

Dr. Commissariat took on this topic as the lead author of a paper on identity and treatment adherence in teens and young adults with type 1 diabetes, which appeared in Pediatric Diabetes. She and her co-authors looked at the differences between those who “incorporated” their illness versus those who “contained” it or tried to keep it separate from the rest of their identity. “Those who incorporate their illness … take it into account in their daily life and are able to find ways to include the illness as part of their sense of self. Those who contain their illness may try to keep their illness hidden, worry about stigma, or try to … maintain a sense of self [that is] unburdened by illness, often ignoring daily self-management needs.”

What they found, Dr. Commissariat explained to me, was that people who tend to take a more “positive approach to making diabetes part of their sense of self – people who view it as ‘it’s my burden and I’m okay with it’ – tended to have lower A1C levels. They were a little more engaged in treatment.” In other words, those teenagers who managed to incorporate diabetes into their identity usually did better.

Because of this, Dr. Commissariat works with her patients to help them develop an identity that has “an appropriate degree of type 1 in it. I don’t think anyone needs to identify first and foremost as a person with diabetes. But the fact of the matter is that there are secondary issues that come up if we don’t take care of diabetes. So, you must identify with it to some extent. And I think what oftentimes becomes difficult for teenagers is finding that balance between being a ‘normal teenager’ and being a teenager with diabetes. Because on its face, they don’t really go hand-in-hand, but they should and they can.”

As I’ve witnessed firsthand with our daughter, adolescence can be a time when children want to move away from their identity as someone with type 1. When Rachel Rifkin was a teenager, she found herself transitioning from being relatively open about having type 1 to having it be something that she preferred to keep to herself. “I always did whatever I could to avoid people knowing about it. I always wore my pump in a back pocket. I never wanted to clip it onto the front of my pants or anything.”

In her practice, Dr. Addala has seen people go both ways. While she says that it’s more common for teenagers to “minimize the thing that makes them different, which is a very normal teenage developmental thing to do,” she’s also had patients who have embraced that difference. And in fact, in those individuals she sees a “further doubling down on the fact that diabetes is what makes them who they are; it’s a source of strength and pride and something that defines their character.”

But for those teenagers who aren’t willing to talk about or share that they have diabetes, both Dr. Commissariat and Dr. Addala try to understand the reasons behind the hesitancy. As Dr. Addala explains, “I try to see where the source of the apprehension comes from. Is it specifically that they don’t mind taking care of their diabetes or they don’t mind wearing technology, but they just don’t want other people to see?”

In these situations, Dr. Addala treads lightly and tries to respect the teenager’s feelings while gently encouraging them to open up. “I let them lead a bit when this topic comes up. They might say, well, I think I could probably tell my closest friend that I have diabetes. Or maybe they’re not willing to tell anyone, and I do my best to support them even in those cases. I’m trying to find out where their internalized stigma is originating from, and then see how far they’re willing to go in terms of who they share the information with. I generally use this approach because then they have some ownership.”

Dr. Commissariat points out that there’s an essential difference between being private about having diabetes and being secretive about it. As she tells her patients, “You don’t need to advertise it. But for safety purposes, it is important that at least a couple of your close friends know.”

She also talks about helping teenagers learn to communicate that they have type 1 in a way that feels manageable and builds confidence. She tells her patients: “I want to know exactly what you wish other people knew about diabetes. And then let’s find a way to teach people in a way that is not burdensome to you. Teenagers are trying so hard to not draw too much attention to themselves, so I often practice with them in our visits – how can we bring this up in a way that is not going to bite you in the back? That could mean having a serious discussion with your best friend, or that could mean something as easy as wearing short sleeves around people who don’t know you have diabetes, just so that they can see your CGM. Wait for people to comment on it. Use a passive disclosure strategy where you just pull out your pump and you take a bolus, and you don’t say anything unless somebody asks you.”

It’s especially helpful for teenagers to have a disclosure strategy when it comes to romantic or physical relationships. As Rifkin says, “With people you’re interested in, it’s a whole other web that you have to navigate in terms of what you tell people and when. And as I’m sure you can imagine, if you have a CGM or a pump, there are physical things on your body that may come up. It’s helpful to have a strategy for how you deal with that.”

Teenagers tend to be both self-centered and self-conscious, so when it comes to diabetes, it’s easy for them to assume that everyone is noticing it in a negative way. Rifkin remembers being in a movie theater one time when her pump started beeping. “I was so horrified. I was like, ‘Oh my God. Everyone must hate me right now. I’m ruining this experience for them.’ You don’t have a lot of perspective at that age. Diabetes seemed like such a big deal.”

Dr. Commissariat points out that all teenagers tend to think the focus is on themselves – even when it’s not. She tells her patients, “Your friends don’t care that you’ve had to go to the bathroom to take an injection. Your friends are like, ‘Okay, let’s go to the bathroom, then I can check how my hair looks.’” And she comments that those who do ask about it are probably asking because “they’re interested and they’re curious, and maybe those will be the people who will help you in the future.”

Another tip Dr. Commissariat gives her patients is to make sure that they talk about diabetes in the way they want others to see it. “If you don’t want it to be a big deal, don’t make it into a big deal because people are going to mirror you.”

For both Dr. Addala and Dr. Commissariat, part of the process is working with the parents on learning how to give their children the space to develop independence, as teenagers need to do. This can be a difficult transition, since diabetes requires so much oversight from both the parent and the child. As Dr. Commissariat says, “One of the major tasks of this developmental stage is to be independent and become less attached to your parents. But it’s really hard with diabetes to be less attached to your parents and be more like your friends when you’re managing something that takes so much responsibility.”

Dr. Addala focuses on helping parents try to see the situation from their child’s perspective. “So often part of the conversation is helping the family understand why a teenager might not want others to know they have diabetes. Where safety is concerned, it helps for the family to create boundaries around what is a true concern, and what’s just an added buffer in terms of safety.”

For both Rifkin and Dr. Commissariat, owning type 1 was a long process, one that continued into adulthood. Now, Rifkin says, “I’m a lot more open about it. I think it makes sense that those feelings that teenagers have of wanting to be private and not wanting to stick out at all fade over time, as people feel more confident in their own skin. These days I don’t feel like I have to explain it to anybody.”

Dr. Commissariat describes a long process of slowly pushing herself to make diabetes a more public part of her identity; she started by keeping her pump on display rather than keeping it in her pocket. Then she moved to bolusing and checking her blood sugar in front of people she knew and then also in front of people she didn’t know. Part of the change, for her, started when her nurse practitioner sat her down and said, “You’re not a diabetic, you’re a person with diabetes.” (Dr. Commissariat has since learned about research suggesting that this shift in labeling helps people become “more accepting of their identity with diabetes.”)

“When I look back on it now,” she says, “that statement suddenly clicks for me [in terms of] everything I went through. I thought diabetes was trying to define me, and that was my big mistake. I own it, it doesn’t hold me. When I allowed diabetes to be a part of my day and created my own definition of myself with diabetes as just a part of who I am and what I do, it wasn’t quite as burdensome anymore, but still annoying, no doubt.”

As for our daughter, after a year at her new school, my sense is that she’s still private about her diabetes, but she’s no longer secretive. A couple of her closest friends at her school now know, and that feels like a good start. At an event at the end of the year, after what felt like months where she hadn’t been willing to bolus in front of anyone, I finally saw her pull out her pump and give herself insulin right there in public – even if she was a bit off to the side. No one except me seemed to notice. I felt like she was beginning to establish that place for herself where she could feel like any other teenager. A teenager who just happens to have diabetes.

About Katie

Katie Bacon is a writer and editor based in Boston. Her daughter was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie’s writing about diabetes has appeared on TheAtlantic.com and ASweetLife. Katie has also written for The New York Times, The Boston Globe, and other publications.

Note: Given the personal nature of this article, Bacon asked for and received her daughter’s permission to publish it.

Source: diabetesdaily.com

Dr. Steven Edelman on Hypoglycemia + Glucagon

This content originally appeared on Beyond Type 1. Republished with permission.

By Alexi Melvin

Dr. Steve Edelman, MD, is a diabetes specialist as well as the Founder of Taking Control of Your Diabetes (TCOYD) — an organization focused on empowering those with diabetes and encouraging them to “take a more active role managing their diabetes, and being self-advocates.”

Dr. Edelman recently took the time to chat with Beyond Type 1 about the importance of glucagon, among other key issues around hypoglycemia.

BT1: Thanks so much for speaking with us today Dr. Edelman — to start, can you talk about your personal background with type 1 diabetes?

Dr. Edelman: When I turned 15, I came down with all the drastic signs and symptoms and was diagnosed with type 1. 1970, they really were in the dark ages. So, my doctor put me on one shot of insulin and regular in the morning and we had urine testing and that was it. Could you imagine being on regular insulin just with breakfast?

And then eventually when I was an undergrad at UCLA, I ran into some really good diabetes doctors and they got me on the right track, but I did have really poor control for a long time. I didn’t really realize the importance of it. Unfortunately, as a result, I do have complications, but the good news is they’re stable.

What inspired you to create TCOYD?

It dawned on me that the education to people with diabetes was really quite lacking way back to 1995. I went to the Joslin clinic for my training. I went to UCSC to do clinical research, and I realized, all of the education was just going to healthcare professionals.

Not that it wasn’t good, but that’s the only direction it was going. I decided to put on a conference for people with diabetes at the San Diego convention center in September of 1995 and that was the beginning of TCOYD. And I was just going to do one conference here. I had two young kids and so I was just going to do it once a year. And that was a lot of work. But the feedback was so powerful, and people were, it’s a great phrase, so thirsty for information that I just said, “you can’t just stop at one a year” and then slowly spread. And then we started putting them on around the United States.

I felt that it was still important to educate healthcare professionals and about 15 years ago I kind of gave up on healthcare professionals. They were really stuck in the mud, really hard to change their practice habits, so that’s why I focused on patients. Then about 15 years ago, we started this program called Making the Connection, where we brought people with diabetes and healthcare professionals together in the same learning environment. The healthcare professionals got their own lectures in their own room at the convention centers and patients got their own, but in parts of the day, we brought them together. It was all in an effort to improve the doctor-patient relationship because our system is pretty broken. People are pretty pissed off at their caregivers. And if you don’t have trust in your caregiver and if the caregiver doesn’t have empathy back, it’s a bad combination.

So now we do our CME programs in parallel with our patient programs, and now we converted to virtual and I think we did a really good job. I don’t get much credit myself. If you’ve seen some of the crazy videos we do to try to keep education entertaining. I think we have a combination of good content and entertaining. I think the future’s going to be virtual learning for us. We have a conference on Saturday and we have people signed up from 60 different countries, about 3000 people across the United States, every state.

What sparked your desire to bring awareness to hypoglycemia and the need for glucagon options in particular?

A lot of people do not remember that in the old days there were people dying of hypoglycemia and it still occurs. Thanks to the continuous glucose monitor (CGM), it has gone down dramatically. I haven’t had any patients recently pass away from hypoglycemia, but I’ve had 10 people through the years, and they all were the same. They all had really good control. They were told a zillion times that they need to avoid complications, get their blood sugars down, but we didn’t have tools to prevent severe hypo. After having type 1 diabetes for 10 years, you kind of lose your response to hypoglycemia and you lose your symptoms. It’s really a sad thing.

What are some of the main issues that lead to severe hypoglycemia today?

Being a diabetes specialist, I see some pretty serious stuff all the time including people who failed at using the old glucagon kit, which delayed therapy and caused unbelievable hassles. I also have an uncle who had type 1 and he died from hypoglycemia and he had severe hypoglycemia unawareness. He had no complications of diabetes. He was treated at the Joslin Clinic when he was diagnosed, but he was so strict. I could not get him to back off like my other patients. And he basically got low and didn’t realize it. And that was it.

How have glucagon options progressed?

With the old glucagon kits, you had to be almost like a chemist to put these things together. And think about it, the person administrating and getting the glucagon ready to give, they’re typically not medically oriented. They’re the mother, the sister, coworker. And you’ve got to squirt diluted fluid into a little vile of powdered glucagon, mix it up, make sure it’s all dissolved. Then you got to suck it back out into the syringe. Then you got to take the syringe and jab it into someone on the ground that’s typically having a seizure or biting their tongue or rolling over, or demonstrating pretty bizarre behavior, which can occur. And when someone’s like that, time is of the essence. Anything that could make the quick administration of glucagon in an easy way for almost anybody, no matter what type of background is, is so important.

What would you say is the biggest obstacle around glucagon access today?

I think the biggest issue today is people do not have a valid prescription for it. I always have this analogy, if you have a house or an apartment and it gets robbed and they steal everything that’s important to you, what do you do next? You get an alarm system on your house. And I always say that same analogy. If someone’s had a bad hypo, they always have glucagon with them, but they did not have one at the time that they really needed it when they had a bad hypo. So, we have to really say, “Yeah, it can occur even if you’re on CGM, especially if you’re a type 2 on insulin as well,” cause that happens. And you got to have a valid glucagon kit with you, a valid meaning unexpired. These new glucagon kits last much longer. They don’t expire as fast as the older ones do, so that’s also helpful.

What are some ways that the CGM can most effectively help avoid hypos?

Well, one of the things I do in clinic is to really check where people set their upper and lower alerts. I had a patient yesterday in clinic who has had type 1 for 60 years. Her A1C is unbelievable, but she does have hypo unawareness and her lower alert was 65. You have to convince people that the extra alerts are worth it to you.

A lot of people said they put their lower alert at 65 and they don’t realize this situation called the “lag time.” So, when your blood sugar is dropping, even if you have a diagonal arrow down compared to, even worse, one arrow down or two arrows down, looking at the Dexcom arrows, they don’t realize that the glucose in your circulation is probably much lower than it appears on the Dexcom monitor or your phone. Because the Dexcom sensor and other sensors too, they measure the glucose in the subcutaneous tissue, and there’s a lag between the subcutaneous tissue and the circulation.

When your Dexcom goes off or when your CGM goes off at 65, and if your trend arrow’s going down, you could be 45 or 40. So that’s really an important issue, especially for people that their symptoms aren’t as obvious anymore. You could be caught off guard. And I had multiple patients that has occurred with. And then unfortunately, as you know, the majority of T1Ds in this country do not wear a CGM and that’s the topic of a whole other story.

Does this lag time issue apply to a regular glucometer as well?

Yes. If your blood sugar is dropping, your meter or CGM may be perfectly accurate of the subcutaneous tissue at 65. If you checked your blood sugar with a meter, it’s still going to say 65, but your circulation that’s going to your brain might be 45. So, the lag time is key. You could have the most accurate meter or CGM in the world, it doesn’t affect the lag time.

Is there anything else that you would want people to know about glucagon options that you don’t think is discussed enough?

I would say this, people have to ask their caregiver for it because in a busy clinic, it’s typically the last on the list and it’s important that they ask for a glucagon prescription.

I think they need to know that there’s two now that are just as easy to use as an EpiPen. Obviously, one is the nasal spray (BAQSIMI). But these devices aren’t for them, they’re for people who are going to be around them and that they should get more than one if they’re going to be at work or out of the house a significant part of the day. And have their best friend or their coworker be on the cautious side because when you least expect it, it can happen.

Source: diabetesdaily.com

Insulin at 100: An Inspirational but Complicated History

This content originally appeared on diaTribe. Republished with permission.

By James S. Hirsch

The discovery of insulin promised a new age for an ancient condition but introduced unexpected challenges. James S. Hirsch explores the riveting history of this miracle drug on its 100th anniversary.

PART 1: The Discovery

It was hailed as a miracle cure, a boon to the human race, an elixir that turned death into life and whose discovery was freighted with Biblical allusions. This year marks the one-hundredth anniversary of insulin, and the drug, first coaxed from the pancreas of dogs by unheralded scientists in a crude Canadian laboratory, remains one of the most remarkable feats in medical history.

But the history of insulin is not one of unalloyed celebration. It has moments of triumph as well as grievance. Like diabetes itself, it’s complicated.

***

It’s easy to lose sight of what insulin’s discovery represented in 1921. As the historian John Barry notes, the previous 2,500 years had seen virtually no progress in the treatment of patients, and the world had just emerged from the Spanish flu, which killed more than 50 million people and was ultimately subdued not by medical science but by the immune system’s adapting to the virus.

In other words, doctors in 1921 were all but impotent against any serious disease, including diabetes.

Then came insulin.

Anyone today who uses insulin does not need to be told of its life-saving power, and I am hardly an impartial observer, as it has kept me alive for the past 44 years.

Insulin today, however, bears little resemblance to what it was when I was diagnosed, let alone to what it was in its early decades. Patients then relied on imposing glass syringes whose thick needles had to be sharpened on whet stones and boiled for reuse. Nowadays, the ultrafine needles are disposable; smart insulin pens communicate with the cloud; and sleek insulin pumps are connected to continuous glucose meters. The insulin itself has been transformed – from impure concoctions derived from the smashed, blood-soaked pancreases of pigs or cows to laboratory-created, gene-splitting analogs with an array of pharmacokinetic properties. Inhalable insulin, long promised and finally delivered, represents a vaporous new-age alternative.

Research on insulin has attracted some of the world’s most brilliant scientists, as Nobel prizes have been given for insulin-related research in four separate decades. The work conducted on human insulin in the 1970s and ’80s, involving recombinant DNA, helped give birth to the modern biotechnology industry, including such pillars as Genentech and Biogen.

But there is more to this history than scientific breakthroughs and professional laurels.

Insulin has been misrepresented and misunderstood, even by some of its most important standard bearers, to the detriment of patients. For many years, the miraculous power of insulin, promoted in marketing efforts and publicity stunts, misled the public about the real-life experiences of those actually living with diabetes. In more recent years, insulin has been shunned by type 2 patients who could be using it or has been underused by type 1 patients. We are in the midst of a global diabetes epidemic, but insulin use has actually been declining because better therapies for type 2 diabetes have usurped insulin’s preeminence. And as insulin prices have soared, the insulin companies themselves, in a stunning reversal, have been transformed in some eyes from saviors to villains.

Meanwhile, the future of insulin itself is not certain, as better therapies could someday make obsolete the miracle drug of 1921.

***

Insulin was not technically “discovered” in 1921. Its role in the body was already known, its connection to diabetes already established.

The disease was first identified in 1500 BC, and in 250 BC, the disorder was named “diabetes” from the Greek word syphon, as its victims suffered from excessive urination. (One researcher later described diabetes as “the pissing evil.”) Researchers’ understanding of the disease advanced in 1869, when a German medical student named Paul Langerhans discovered “islands of cells” in the pancreas; and over the next three decades, investigators identified these cells as regulating glucose metabolism and directly associating them with diabetes. By 1916, the word “insulin” had been coined to describe that pancreatic substance.

But after more than 3,000 years, there was still no effective treatment for the disease. Researchers, however, did recognize that carbohydrates accelerated a patient’s decline, so the best treatment, developed in the early 1900s, was to withhold food – also known as the starvation diet, which allowed patients to extend their lives in sinister emaciation. Most of these patients were children, so grieving parents had to watch their children waste away – sometimes clustered together in hospital wards – and die either from starvation or diabetic ketoacidosis.

That made the search for insulin even more desperate, as investigators around the world sought to discover a “pancreatic extract” to save these dying children against the ravages of an ancient disease.

Research

Image source: iStock Photo

The breakthrough happened in Toronto in 1921, led by a prickly researcher who was a mere five years out of medical school. Frederick Banting had tried his hand as a surgeon but couldn’t earn a living, so he turned to teaching. He had no research experience and knew little about diabetes; but he had read a paper on it, and he later said that he had a dream about discovering insulin. In a longshot bid, Banting began his work in May at the University of Toronto, and he was assisted by a young medical student named Charles Best. They removed the pancreases from dogs to make them diabetic and then developed pancreatic extracts to try to lower the blood sugars. It was bloody, messy, difficult work – seven dogs died the first two weeks – but by August, one of the extracts, delivered by intravenous injections, proved successful. A biochemist, James Collip, was summoned to try to purify it for human use – he later called it “bathroom chemistry” – and on January 11, 1922, a 14-year-old boy, Leonard Thompson, received the first injection of insulin.

It was described as a “murky, light brown liquid containing much sediment,” it was given to him over several weeks, and it worked: the sugar and ketones in the boy’s urine disappeared.

“Diabetes, Dread Disease, Yields to New Gland Cure,” the New York Times announced.Tweet this“Diabetes, Dread Disease, Yields to New Gland Cure,” the New York Times announced.

The Toronto researchers couldn’t mass produce insulin, but Eli Lilly could, at least in the United States. (Other companies did in Europe.) Eli Lilly is headquartered in Indianapolis and, at the time, was in convenient proximity to many stockyards. The company stored a million pounds of frozen pancreases from pigs and cows to keep up with demand – there were an estimated one million Americans who needed insulin – and the company’s scientists, managers, and laborers were every bit the heroes as the Toronto researchers.

This new miracle drug did not disappoint.

Frederick Allen, one of America’s leading diabetologists, said his patients, upon receiving insulin, “looked like an old Flemish painter’s depiction of a resurrection after famine. It was a resurrection, a crawling stirring, as of some vague springtime.”

Elliott Joslin, America’s preeminent diabetes clinician, described his patients who took insulin as the “erstwhile dead” and invoked Ezekiel’s vision of the valley of the dry bones, in which God says, “Come from the four winds, O breath, and breathe upon these slain, that they may live.”

The photographs told an even more dramatic story: In one famous picture, a naked 3-year-old boy who weighs 15 pounds clings to his mother, his face grimacing, his ribs exposed. After taking insulin for only three months, a head shot shows the boy with full cheeks, alert brown eyes, and dark locks of hair. He looks normal – and cured.

If there were any doubt about insulin’s curative powers, Elizabeth Evans Hughes removed them. Her father, Charles Evans Hughes, had been the governor of New York, a justice on the U.S. Supreme Court, a candidate for president, and in 1922, was the U.S. Secretary of State. Elizabeth had been diagnosed with diabetes in 1919, so when she took her first dose of insulin in 1922, she became the poster child for this new drug.

After more than three millennia, it appeared that medical science had defeated diabetes.Tweet this“Hughes’ Daughter ‘Cured’ of Diabetes” declared one unidentified newspaper. After more than three millennia, it appeared that medical science had defeated diabetes.

Stay tuned for parts two and three of this riveting story over the next two weeks!

I want to acknowledge the following people who helped me with this article: Dr. Mark Atkinson, Dr. David Harlan, Dr. Irl Hirsch, Dr. David Nathan, Dr. Jay Skyler, and Dr. Bernard Zinman. Some material in this article came from my book, “Cheating Destiny: Living with Diabetes.”

About James

James S. Hirsch, a former reporter for The New York Times and The Wall Street Journal, is a best-selling author who has written 10 nonfiction books. They include biographies of Willie Mays and Rubin “Hurricane” Carter; an investigation into the Tulsa race riot of 1921; and an examination of our diabetes epidemic. Hirsch has an undergraduate degree from the University of Missouri School of Journalism and a graduate degree from the LBJ School of Public Policy at the University of Texas. He lives in the Boston area with his wife, Sheryl, and they have two children, Amanda and Garrett. Jim has worked as a senior editor and columnist for diaTribe since 2006.

Source: diabetesdaily.com

Research Perspectives From a 50-Year Diabetes Medalist

By Chris Stiehl, T1D patient for over 61 years, so far

The Joslin Diabetes Center at Harvard Medical School began in 1893 when its founder, Elliott P. Joslin, MD, first developed his interest in diabetes care. This center was among the first-ever dedicated to the study of diabetes. It is well-known for many discoveries and innovations, including diabetes camps and the introduction of honoring long-term survival for diabetes. For the last 20 years or so, the Joslin Diabetes Center has been studying those who have survived 50 years or more with type 1 diabetes (or T1D). Following the tradition of Dr. Joslin, 50-year survival medals have been awarded to those in the studies since 1972. Dr. George King has been the lead investigator on these studies, having joined the Joslin Diabetes Center in 1981.

Initially, ​the purpose of this study was to document the presence of eye, nerve and kidney complications related to diabetes, as well as to examine DNA and substances in the blood and urine of people with diabetes for 50 years or more. This was to identify factors which may protect from large and small vessel complications, and potentially lead to protection from aging-related diseases. In recent years, funders have investigated related issues and sought ways to extend life with T1D beyond the 50-year Medalist criterion. Indeed, 80-year and 85-year Medalists have been honored at recent meetings.

Over 1,100 Joslin Medalists have been studied so far, including examinations of eyes, skin, kidneys, heart, extremities, nerves, and cognitive functioning. The ensuing results have been enlightening and positive in many ways. For example, Medalists tend to have better bone density than the general population at the same age. There are fewer incidences of classic Alzheimer’s disease symptoms among Joslin 50-year Medalists. Medalists tend to be more outgoing and positive about their future than the general population.


Dr. George King

Many medalists have donated their pancreases for post-mortem study. In all cases, functioning beta cells were found in these pancreases, resulting in occasional “trace” readings with respect to C-peptide even among those who have had T1D 60 years or more.

Data analyses continue for information gained from the studies of Medalist’s blood, retinal images, blood vessel scans, and retinal data. More and more results are being published from the Medalist studies each year.

There will be a Senior T1D session featuring Dr. King at the JDRF Type One Nation Virtual Summit on April 24th, 2021. Several very interesting sessions are scheduled on topics such as COVID and T1D, as well as the mental strain of restrictions of activities and interactions due to COVID. This TON Summit should be as exciting as the one last September, if not more so.

JDRF awarded an Impact Grant to Chris Stiehl to host a senior summit concerning the results of the Medalist studies on the west coast, since most of the Medalist meetings in the past have been held in Boston and many Medalists were unable to attend previous meetings due to health, travel or age limitations. This meeting will be in-person, at the LAX Marriott on August 15th, providing it will be relatively safe to meet by then. You must register in advance for this Senior Summit for Long-Term T1D. The program is still being constructed, but Dr. King has indicated his desire to participate, as well as Aaron Kowalski, CEO of JDRF.

Although the data concerning the relationship between COVID and long-term T1D is sparse, at best, at this point, it is known that transplant patients and those with compromised immune systems are at greater risk for more severe cases. We plan to have a speaker on that subject, as well as subjects requested by Medalists for the Senior Summit, such as research on new devices and tools, so-called “smart” insulins, artificial pancreases, better metrics (beyond A1c), looping and others.

Source: diabetesdaily.com

Would You Restrict Carbs to Ease Diabetes Management? (ADA 2020)

Children and adolescents with type 1 diabetes are currently living at a time of a big diabetes technology boom. Continuous glucose monitors (CGMs) and insulin pumps are becoming more popular and offer the promise of better glycemic management and more freedom and peace of mind. As research and clinical trials on automated insulin delivery systems are in full-swing, clinicians from The Joslin Diabetes Center, Yale University, and Harvard University were interested in understanding various patient preferences. In one study, they posed the following question:

Would young people with type 1 diabetes be willing to limit their carbohydrate intake to a maximum of 50 g per meal if this meant they wouldn’t have to administer a manual bolus using an artificial pancreas (AP) system? 

The outcomes of this research were recently presented at the American Diabetes Association (ADA) 80th Scientific Sessions.

To help understand patient perspectives and preferences on this subject,  39 participants (average age 17 +/- 4.7 years) were recruited at two study centers. These patients had an average diabetes duration of 9.4 +/- 4.9 years and an average HbA1c of 8.4 +/- 1.1 %. Interviews were conducted with each participant and parents to gauge their views on the willingness to “limit carb intake to 50 g per meal/snack if this would eliminate the need to manually bolus for food when using the AP system.”

Based on their analysis, the study authors derived the following major insights:

  1. The majority of participants (and their parents) would prefer to have the option of eating more than 50 g per meal/snack and were willing to manually bolus for the excess carbs.
  2. Most believed that 50 g per meal or snack was too restrictive.
  3. Young people generally agreed that automation would “reduce self-care burden.”

The researchers concluded,

“An aversion to food restrictions overpowers the desire for an AP system that can independently manage glucose levels though limited carbohydrate intake. Carbohydrate limitations appear to increase self-care burden more than the time and effort expended on carb counting and bolusing. Future AP systems should consider options that enable users to choose to bolus manually for large meals and to forego bolusing for smaller ones.”

Here are a few notable quotes from the participants, which were highlighted in the poster presentation:

“I think that, if I had to choose between bolusing or limiting my carb intake, I think I would rather bolus, just because nobody really wants to be told what to do.” (25-year-old female)

“Every once in a while she wants to have an ice cream. You know, I think she should be allowed to have these things sometimes when she wants them. I don’t want her to be too restricted.” (Mother of a 16-year-old.)

Sadly, despite continuing advances in technology, the glycemic management for youth with type 1 diabetes has been stagnant or worsening, depending on the age group, for decades. As per the most recent available data, the average HbA1c for young people with type 1 is about 8.7%, similar to what was observed in this cohort. Automated insulin delivery could offer an important solution to so many young people who do not meet the ADA-set glycemic targets (currently, the organization recommends individualizing the A1c goals, from as low as <6.5% all the way up to <8% for some patients).

This study provides an interesting snapshot into what many young people with type 1 diabetes appear to consider very important — the freedom to eat whatever they want and bolus for it. 

There has been a long-standing debate, often in the diabetes online community, and sometimes among healthcare providers, about a low-carbohydrate approach for young people. Many have highlighted the benefits, and exceptional success stories. They are not just anecdotes, either. At least one study has demonstrated exceptional outcomes of carbohydrate lowering for youth with type 1 diabetes, with excellent adherence and reported quality of life, a normal average A1c of ~5.7%, and a very low rate of adverse events.

Nevertheless, some question difficulty of maintaining a lower-carbohydrate diet, and concerns have been cited over the potential for the development of eating disorders as a result of “restricted eating”.

When it comes to developing AP systems, this study suggests that many young patients would prefer more flexibility in the upper threshold of their carbohydrate intake and are willing to put in the work to manually bolus for and accept the outcomes, whatever they may be, of higher carbohydrate eating patterns, in lieu of sticking to a recommended carb limit and not having to manually deliver their insulin dose. Of  course, this is just a small study, and the results may be skewed towards this perspective due to the predominance of teenagers in this cohort. Also, it may be interesting to evaluate a shift in this perspective, if any, following a formal diabetes education program to explain to patients and parents, in detail, the benefits of lowering carbohydrate intake for diabetes management in general, and in the context of AP technology.

What are your thoughts on the subject? We love hearing from our readers.

Source: diabetesdaily.com

Research Trends with Dr. Maria: Beta Cells, Botox, and More

Dr. Maria Muccioli holds degrees in Biochemistry and Molecular and Cell Biology and has over ten years of research experience in the immunology field. She is currently a professor of biology at Stratford University and a science writer at Diabetes Daily. Dr. Maria has been living well with type 1 diabetes since 2008 and is passionate about diabetes research and outreach.

In this recurring article series, Dr. Maria will present some snapshots of recent diabetes research, and especially exciting studies than may fly under the mainstream media radar.

***

Even Very Slightly Elevated Blood Glucose May Impact Beta Cells

When diabetes first develops, a reduction in insulin production initially results in just a slight elevation of blood glucose. A just-published study by researchers at the Joslin Diabetes Center employed cell culture and mouse models to assess how very slight elevations in blood glucose levels might affect the beta cells. Interestingly, the scientists discovered that even slight perturbations in glycemia (*as little as “being only 11 mg/dL higher than controls) could result in gene expression changes in the beta cells. The major conclusion of the investigation was that “mild glucose elevations in the early stages of diabetes lead to phenotypic changes that adversely affect beta cell function, growth, and vulnerability.” Continuing to investigate exactly how the early stages of diabetes may affect disease progression may aid in the development of treatments aimed at slowing or halting disease progression by preserving or improving beta cell function. This study also underscores the importance of early diabetes detection and treatment.

Different Subtypes of Type 1 Diabetes Classed by Age at Diagnosis

The pathophysiology of type 1 diabetes is complex, although it is generally accepted that in most cases, a genetic predisposition and an environmental trigger result in disease onset. A research study that was recently published in the journal Diabetologia aimed to investigate different subsets (endotypes) of type 1 diabetes by evaluating the level of insulin production from recently-diagnosed patients. Interestingly, the authors report that in patients who were diagnosed prior to age 30, “there are distinct endotypes that correlate with age at diagnosis”. Specifically, the new research showed that those who were diagnosed at a very young age (before seven years old) exhibited more defective insulin processing as compared to those diagnosed at age 13 and older. The scientists believe that stratifying type 1 diabetes cases by endotype will prove useful in the most appropriate design of immunotherapies to treat the condition.

Male and Female Offspring May Be Differently Affected by Maternal Diabetes

Hyperglycemia during pregnancy can negatively affect the offspring. A study published in April 2020 in the journal Brain, Behavior, & Immunity – Health indicates that the effects of hyperglycemia on central nervous system development may affect male and female offspring differently. Notably, the authors concluded that while hyperglycemia could cause developmental defects in males in females, when it came to “impairments in recognition memory,” specifically, it was found that only the females were negatively affected. Although this research was performed in rodents, it offers valuable insights into how maternal diabetes may affect offspring development in a sex-specific way. Notably, it was also demonstrated that insulin administration to achieve strict glycemic control mitigated the negative effects, once again highlighting the importance of optimal glycemic management before and during pregnancy.

Botox Injection Plus High-Protein Diet for Obesity Treatment

Interestingly, the injection of botulinum toxin (Botox) has been shown effective in the treatment of obesity. A research study recently published in the journal Obesity Surgery evaluated the efficacy of botulinum toxin injections alongside a calorie-restricted, high-protein diet for weight loss. Participants were assigned to one of three groups: 1) botulinum toxin treatment only; 2) botulinum toxin treatment + calorie-restricted/high-protein diet; or 3) calorie-restricted/high-protein diet alone. Excitingly, the results showed that patients who received botulinum toxin treatment prior to initiating the diet protocol achieved faster weight loss and experienced more positive effects in improving comorbidities. The authors theorize that botulinum toxin treatment may help “facilitate adaptation to the new diet style”.

“Kitchen Intervention” in Type 2 Diabetes Education Helps Improve Outcomes

Several educational intervention programs aimed at improving glycemic management in patients with type 2 diabetes were compared in a recent initiative by the Milwaukie Family Medicine center in Oregon. A traditional diabetes education class was implemented for one group of patients, while a second group was assigned to the traditional education program, along with a “health-focused, budget-friendly cooking class” provided by the Providence Milwaukie Community Teaching Kitchen. Hemoglobin A1c measurements were acquired at baseline, and at several months post-intervention. The recently published results demonstrated that patients who participated in the cooking class intervention, lowered their A1c levels more, on average, than those who attended the traditional education program alone. Although this initiative was a small one and yields very preliminary results, the outcomes suggest that intervention programs focused on real-life applications (like budgeting and cooking) may afford better patient outcomes.

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Please share your thoughts with us and stay tuned for more recent research updates!

Source: diabetesdaily.com

What Should I Do If I Have Symptoms of COVID-19?

As the global viral outbreak continues, you may be wondering what special considerations there are for people with diabetes to keep in mind. In particular, what should you do if you begin to experience symptoms consistent with the infection? This article reviews the most common COVID-19 symptoms, discusses potential issues specific to people with diabetes, and provides a guideline of how to respond if you become sick.

Symptoms of COVID-19

Be on the lookout for the following most common symptoms of COVID-19:

  • Fever
  • Coughing (especially dry)
  • Shortness of breath

Other symptoms may include fatigue, body aches, and sore throat, among others.

Special Considerations for People with Diabetes

You may have heard that people with certain medical conditions, including those with diabetes, are considered to be in the high-risk group for developing more serious symptoms of the disease, and have been reported to have a significantly higher mortality rate than those without underlying conditions. While these statistics are both relevant and can be scary, it is also important to keep in mind that your individual risk will vary widely depending on your specific health status, regardless of your diabetes diagnosis. Your age, other related and unrelated health conditions, and blood glucose management profile, all play a role in determining your overall risk. So, while as a whole population, people with diabetes are at higher risk for complications, your individual risk could be much lower than that.

For instance, as per the JDRF, those who have type 1 diabetes are  “not necessarily at higher risk of developing serious complications from the disease. Those at greatest risk are those who have another, or second chronic disease (such as a compromised immune system, heart disease or renal failure).

Talk to your healthcare provider to better understand your individual risk level and recommendations.

Have a Plan of Action If Symptoms Arise

Being adequately prepared ahead of time can help you feel calmer and more empowered if you do get sick. Consider taking the following steps today, if you haven’t already:

  • Take preventative measures. Stay home. Practice social distancing (note: if you already have symptoms, self-isolate!)
  • Wash your hands. Avoid touching your face. Disinfect “high-touch” surfaces regularly.
  • Make sure that your medication refills are up-to-date so that you have the supply you need if you will stay in your home for a long period of time (e.g., at least several weeks). Make sure that you consider supplies used for diabetes management as well as any other medications that you use.
  • Check that you have medications on hand that you would typically use to treat a viral infection, such as a fever-reducing agent, like acetaminophen (Tylenol). Consult with your healthcare provider for advice about their specific recommendations.
  • Have enough food and water in your home in case you stay home for a prolonged period of time (e.g., several weeks).
  • Review the “Sick Day Rules” for people with diabetes. COVID-19 causes mild symptoms in most of the people who are infected. This means most likely, you will be treating your symptoms at home. However, any illness can make blood glucose levels more challenging to manage. It is important to be aware of how illness can affect your management plan and make adjustments as needed, with the help of your healthcare provider, to keep yourself safe during the illness. You can find the standard “Sick Day Rules” as described by the Joslin Diabetes Center here, but discuss your specific recommendations with your healthcare provider.

So, what should you actually do (and not do) if you develop symptoms of COVID-19?

  1. Don’t panic.
  2. Self-isolate. Don’t go to urgent care or the emergency room, unless instructed to do so or you experience serious symptoms (see below). Stay home.
  3. Call your doctor and follow their advice closely.
  4. Keep a close eye on blood sugar levels. Work with your healthcare provider to make adjustments to medications, if needed, to help stay in the target glycemic range as much as possible. Keeping blood glucose levels in check as much as possible can go a long way to helping you avoid complications during any illness.
  5. Manage your specific symptoms (e.g., fever). Ask your healthcare provider for specific at-home treatment advice.
  6. Stay hydrated. This can help you keep your blood sugar levels in the target range and avoid complications.
  7. Be on the lookout for serious symptoms, including those of diabetic ketoacidosis (DKA), as well as the following “COVID-19 emergency warning signs”:
  • Difficulty breathing
  • Chest pain
  • Confusion or difficulty waking
  • Blue tint to the skin (on the lips or face, in particular)

If you experience these any of these symptoms, promptly seek medical care. Wear a mask if out in public.

  1. Continue to wash your hands and clean surfaces regularly.
  2. Continue to avoid contact with others (humans and pets).
  3. Do not discontinue isolation until you get the “all clear” from your healthcare provider.

***

For even more detailed information on what to do if you are ill, read these guidelines from the CDC:

What to Do if You’re Sick

Guidelines for At-Risk Populations

Also, learn even more about COVID-19 illness with diabetes from the American Diabetes Association (ADA) here.

Source: diabetesdaily.com

GivingTuesday: Donate for Diabetes

Have you heard of Giving Tuesday, a global generosity movement? Learn more and consider donating to a diabetes organization of your choice.
Source: diabetesdaily.com

Joslin Diabetes Center: A Global Leader in Research and Care

Learn about the mission and diabetes advocacy efforts of the Joslin Diabetes Center. Check out this summary to learn more about who they are, what they do, and more.
Source: diabetesdaily.com

Diabetes Care from Parent to Child: Passing the Torch of Care

This content originally appeared on diaTribe. Republished with permission.By Kerri Sparling Transitioning care from parent to child can be a stressful time for families with diabetes – six strategies on how to reduce the burden  Transitioning from my parents being in charge of my diabetes to assuming full care myself didn’t happen overnight. It was a […]
Source: diabetesdaily.com

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