Community Table: Nutrition, Health + Wellness in the Black Diabetes Community

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

By JDRF-Beyond Type 1 Alliance

During our second Community Table discussion, Beyond Type 1 sat down with a group of experts and community members to discuss nutrition, health, and wellness in the Black diabetes community, and share helpful resources and perspectives. Watch the discussion in full!



Speakers included:

  • T’ara Smith, who served as the moderator for this event, was originally diagnosed with type 2 diabetes in 2017 but was re-diagnosed with LADA diabetes in 2019 and is Senior Manager of Beyond Type 2.
  • Keith Crear, who has lived with type 2 diabetes since 2017, is a sports photographer and multimedia specialist.
  • Alexis Newman, who has had type 1 diabetes for 37 years and is a registered dietician.
  • Dex Geralds, who has had type 2 diabetes since 2016 and works as a personal trainer and CrossFit coach.
  • Joy Ashby Cornthwaite, a dietitian and a certifies diabetes care and education specialist.

Partial transcript of conversation below, edited for content + clarity.

What does wellness mean or look like for you, and has your diagnosis changed the way that you live?

Dex: It’s balance. I know a lot of times when I’m with people who don’t typically know about diabetes, there’s a lot of things surrounding food that they believe I cannot have at all. Once you find the balance, you’re able to still eat some of the things that you’re eating before your diagnosis, maybe not at the same amount that you were eating before. Just finding balance with the way you eat, balance in the way you exercise. Whether it’s like myself who exercise maybe two hours a day or just going out for a 15-minute brisk walk. Just finding balance in what comes with that. The last thing in balance is just your mental health and making sure you check in with yourself and your feelings and your emotions and figure out what brings you happiness and joy.

Keith: It is a balance. It’s knowing what to eat, what not to eat, what to consume, when to consume it. Exercise is very, very important.

Alexis: For me, what it looks like is making sure that I am well, not only with how I’m eating, but also exercise. Making sure I’m honest and checking in with my friends and family, my support system, too. Also, the spiritual aspect of it. I’m a Christian, so making sure I’m connected in the sources that I feel encouraged in. When one of those are kind of out of whack, I don’t feel well.

Joy: I think of health on a continuum, and I encourage that in every day. In my family life, in my personal life, but also for those who I help to balance their journey with diabetes because everyone has their own journey and their whole complete individual. When someone comes to a session with me, I find out where on the continuum you are and what can we work on today? It has to come from you. It has to be what you want and not necessarily what I want. But I’m going to use my skills to get you to where you need to be.

What misconceptions have you encountered pertaining specifically to Black people with diabetes when it comes to fitness? What is some of the ways that you’ve helped your Black clients move past those stigmas and misconceptions?

Dex: The biggest thing is support in our community and in the world in general. If you’re overweight you get looked down upon and that can add to depression and lead to worse things. I know a big term going on right now is “unlearning” and taking everything, looking at it through a different scope, and then figuring out what brought you to this point and then what can I do to change this. It’s not just a one-stop shop kind of thing. It’s going to take a while for you to start to see changes for the most part. You have to create these better habits and getting through that way.

Learning to love yourself is vital, and when you learn to love yourself you want to do the things that’s right for you and you’re going to quiet that outside noise and put your blinders on and work for yourself and not think about the negative things that you might be getting from someone else. My family has a history of diabetes and obesity. My oldest sister, she’s lost 150 pounds now, but still just over 400 pounds. I remember things people would say to her growing up. Now that I support her and my family’s supporting her, she’s been on this incredible journey and losing weight because now she feels confident enough to do the things that once scared her or felt ashamed about. Being able to conversate and talk to my sister, or just clients in general, I’ve been able to learn what’s going on and been able to apply that to them in their journey in fitness.

Alexis: The kind of things that I’ve seen is that they believe that people think they’re lazy so they don’t want to push through that because they’re afraid of what people are going to think. I’ve also seen the fear of not knowing what to do overtake them in my discussions with my patients. Another idea is that they have this perceived idea of what exercise looks like, so really breaking it down into bite-sized pieces of like, “Look, as long as you’re like being consistent with the movement, whatever you choose to do, you can add on time, you can add on intensity. But, as long as you’re out there trying to move.” Those are the things that I have conversations with my patients about in terms of fitness.

Another thing too, is that an ideal weight of someone who’s African American may not be similar to another culture or race. We need to keep that in mind as we are discussing food, nutrition, health, and weight that the ideal weight that a doctor may have for you may not be appropriate. I think that needs to be said and also needs to be addressed when we’re talking to these patients about weight and health and glucose numbers and things like that.

Joy: When it comes to fitness, one of the great disservices, especially for the Black community, is to tell people that they need to lose weight if they’re moving. For many people who are living with diabetes, movement doesn’t always equate to weight loss. It also doesn’t always equate to better blood glucose values.

There’s a lot of things that go into thinking about exercise. When you’re telling someone that it’s going to make them better to exercise and they’re saying that their blood glucose is either crashing or going up way too high with exercise there’s a disconnect. You haven’t heard what they’re saying to you. You need to find out what people are experiencing in their exercise journey and then address those things and say, “Look, you may not lose weight, but let’s check your blood glucose before and after.” Celebrate the win over either the hyperglycemia that you have been feeling or the hypoglycemia that you were feeling if you didn’t pre-exercise meal or whatever reason. Celebrate the win that is more than weight.

How can we celebrate our culture or different types of Black cultures throughout the year, not just during Black History Month?

Joy: Support each other. I know for years I felt like I was the sole person saying, “Black people aren’t making ourselves sick with diabetes.” We need help. We need medications. We need diabetes health care and management. We need to know how to take care of ourselves and we don’t have to do that alone. Whatever we need to do we need to support each other and do it together and then we’re louder.

Dex: Our culture is so vast and rich, and it needs to be shared every day and whatever way possible. Whether it’s through social media or just through conversation or the way you dress, the way you wear your hair. It just needs to be expressed and be out there for people to see and enjoy and learn. I love my culture so much.

Alexis: Buy Black. There are so many amazing Black companies, I’ve been focusing on and amplifying those businesses on social media and telling my friends. I’m in a friend group and we’re talking about face care. I’m like, “All right, I’m using this” and they’re using this Black company. We’re just sharing information of these amazing Black companies that are out there. If we can’t do that, then no one else is going to. It’s really important to invest in Black businesses because they’re everywhere.

T’ara: Yes, please support Black businesses that you see, especially in the diabetes community. There’s so many Black people in the diabetes community who have businesses and organizations who could use amplifying on your social platforms. That social sharing could do a whole lot because you never know who can see their products, so please amplify it.

Keith: Constant delivery of content from Black creators. Constantly delivering things from Black history that could be done every day. The way you wear your hair, the clothes. Just something that constantly keeps it in the public eye so it’s not condensed down to just one month. There are a lot of people out there that are doing it and it’s always great to see that. If more of us continue to do that it’ll shift the narrative and it will shift the visual aspect of how we’re seen in society as a whole.

Source: diabetesdaily.com

How to Advocate for Yourself: Making Employer-Sponsored Health Plans Work for Your Diabetes Care

This content originally appeared on diaTribe. Republished with permission.

By Julia Kenney

The therapies, devices, and care that people with diabetes need can be expensive without adequate insurance coverage. For those with employer-sponsored health insurance, there are steps you can take to improve your insurance options and advocate for yourself.

Over 45 percent of Americans have diabetes or prediabetes and roughly half of US adults receive health insurance through their employer. Unfortunately, not all employer-sponsored health plans meet the needs of people with diabetes. According to a study of 65,000 people with type 1 diabetes on employer-sponsored health insurance, the average annual out-of-pocket cost of diabetes care was $2,500. Eight percent of study participants had annual costs well over $5,000. Since diabetes is most prevalent in low- and middle-income households, these costs, in addition to paying for premiums and non-diabetes healthcare, are unaffordable for many people.

If your health insurance does not cover a component of your diabetes healthcare, or if your diabetes care is covered but still unaffordable, you can work with your employer to get better coverage. Here is an overview of the different types of health insurance, who to go to for help, and how to advocate for better diabetes health coverage.

What are the different types of health insurance?

You will have expenses no matter what health insurance you have, but some plans can be more affordable for diabetes care. These are the expenses you will typically encounter with your health insurance plan:

  • Premium – Similar to paying rent, a premium is a fixed amount that you pay every month to keep your health insurance active. It’s common for employers to pay about half of your monthly premium, and sometimes more. In 2019, people with employer-sponsored insurance paid an annual average of $1,242 for health insurance premiums.
  • Deductible – The deductible is the amount you pay out-of-pocket before your insurance provider covers expenses. For example, if you have a $1,000 deductible, your insurance coverage will not kick in until you’ve paid $1,000 in healthcare expenses for that year.
  • Copays – Copays are a fixed amount that you pay for a health service or medication, and your insurance provider covers the rest of the cost. Copays are a helpful way to pay for diabetes care because they are fixed, predictable costs that people can plan for.
  • Coinsurance – Unlike fixed-price copays, coinsurance costs are a percentage of the total price of a health service or medication. These expenses are less predictable because medication prices can fluctuate.

There are three main types of health insurance – health maintenance organizations (HMO), preferred provider organizations (PPO), and high deductible health plans (HDHP). Here is an overview of the different types of health plans and what they might cost:

  • HMO – Health maintenance organizations have high premiums and low deductibles. An HMO plan covers healthcare within a network of hospitals and healthcare professionals. Your providers must be in-network in order to get your diabetes care covered. If your diabetes care professionals are in-network, this is often the most cost-effective healthcare option for people with diabetes.
  • PPO – Preferred provider organizations also have high premiums and low deductibles than HDHPs. PPOs are more flexible than HMOs because you are able to see providers out-of-network and you can see specialists without a referral. Because of this, PPOs typically have higher premiums and out-of-pocket costs than HMO plans.
  • HDHP – High deductible health plans typically have low monthly premiums and high deductibles. In 2020, the IRS defined a HDHP as any plan with a deductible of at least $1,400 for an individual and $2,800 for a family. If you have a high deductible health plan, you can open a health savings account where you set aside money to pay for medical expenses tax-free. These health plans are good for people who don’t anticipate needing regular healthcare; paying for diabetes care can be difficult with this type of plan because you will have high out-of-pocket costs upfront before you meet your deductible.
Advocacy

Image source: iStock Photo

Keeping these different types of health insurance and related expenses in mind, here are some things people with diabetes should think about when reviewing an employer-sponsored health plan:

  • What are my diabetes-related costs? Make a list of your diabetes healthcare costs including medications, devices, supplies, healthcare visits, and lab tests.
  • What are the health insurance costs? Look at the premium, deductible, and whatever cost sharing method (copay or coinsurance) is used for the health plan.
  • Are my medications and devices covered? Refer to your health plan’s Summary of Benefits and Coverage to see what is included in your insurance coverage. If a therapy or device is not covered, you may have to switch to one that is or submit a request to get it covered. Getting a new medication or device covered under your health plan can be a challenging and time-consuming process.
  • Is insulin covered pre-deductible? Some health plans cover insulin before you reach your deductible because it is considered preventive medicine. This can make insulin considerably more affordable, especially for people on high deductible health plans.
  • Are my healthcare professionals in-network? Accessing in-network healthcare is more affordable than out-of-network care. You should choose a health plan where your current providers are in-network or one that has good in-network options.
  • Can I access a flexible spending account (FSA) or health savings account (HSA) to save money? FSAs and HSAs are used to put aside money that is not taxed to help pay for medical expenses. HSAs are paired with high deductible health plans. FSAs can be used for any kind of health insurance and all FSA funds must be used in the same calendar year. Learn more about FSAs and HSAs here.

If I have a problem with my insurance, who do I go to for help?

Your employer’s human resources (HR) department should be able to address many of your insurance-related questions, since it likely helped select the health plan(s) available to you. Your HR department is your first resource for health insurance questions. If you need help selecting an insurance plan, want to see if your diabetes care is covered, need to file a claim, or are having trouble navigating your plan and understanding the costs, the HR department will support you.

For further questions, your HR department can refer you to a representative with the health insurance company or to a third-party administrator. A third-party administrator will help you understand your health plan, file health insurance claims, and navigate the appeals process if your insurance company denies coverage for a diabetes treatment. You can also apply for an exception to get treatments, medications, and devices covered if recommended by your doctor. A third-party administrator will guide you through these steps for getting important diabetes treatments covered.

Advocacy

Image source: iStock Photo

How can I make my employer-sponsored health coverage better for people with diabetes?

People with diabetes typically require expensive medications, devices, and regular visits with healthcare professionals to stay healthy. Robust employer-sponsored health insurance plans should make these expenses affordable and predictable. If you are trying to make permanent changes to your employer-sponsored health plan, your HR department can help you advocate for future health plans that better support diabetes needs. Employers have the power to make changes to their health coverage options every year. Here are some changes you can advocate for:

  • Add insulin and other diabetes care to the preventive medicine list.

In 2019, the IRS ruled that expenses for chronic disease management can be covered before you meet your deductible under a high deductible health plan. HMOs and PPOs also have preventive medicine lists. Diabetes care such as insulin, A1C testing, blood glucose meters, and eye screening – which are all considered preventive medicine – can be added to the preventive medicine list to reduce the copay or coinsurance costs for diabetes care. This saves employees money instead of paying full price before meeting their deductible.

  • Request to get a medication or device covered under your health plan.

If a device or medication you currently use (or want to try) is not covered under your health plan, you can ask for coverage in next year’s health plan. Diabetes devices, such as continuous glucose monitors (CGM) and insulin pumps, can help people with diabetes manage their glucose levels and increase their Time in Range, but are expensive without insurance coverage. Employers can typically negotiate to cover essential diabetes care, so request coverage for your medications and devices. Your diabetes treatment should be determined by your healthcare professional, not by what’s included in your health plan.

  • Share discounts and rebates with employees.

While list prices for diabetes medications may be high, your employer’s pharmacy benefit manager (PBM) can negotiate discounts and rebates on drug prices on behalf of the insurance plan and employer. The list price minus the negotiated discounts is called the net price. Sometimes PBMs and employers will keep the money saved; however, employers can pass discounts on to their employees to lower their out-of-pocket costs.

  • Use copayments for cost sharing instead of unpredictable coinsurance.

Coinsurance costs are unpredictable because they fluctuate as a drug’s net price changes. You can advocate for your employer to choose health plans that use copayments for healthcare cost sharing, instead of coinsurance.

More resources for accessing diabetes healthcare with your employer-sponsored health plan:

Feel free to share this article with your employer or your HR department. All people with diabetes deserve access to affordable, high-quality care. To learn more about health insurance and affording diabetes treatment, visit diaTribe.org/access.

Diabetes Series

Image source: iStock Photo

This article is part of a series on access that was made possible by support from Insulet. The diaTribe Foundation retains strict editorial independence for all content. 

Source: diabetesdaily.com

Breakthroughs in Pancreatic Cell Replacement: The ViaCyte Interview

I recently had the opportunity to sit down with Manasi Sinha Jaiman, M.D., M.P.H., Vice President of Clinical Development, and Mark Daniels, Senior Director of Clinical Development, of ViaCyte, “a regenerative medicine company focused on delivering novel stem cell-derived cell replacement therapies as a functional cure for all type 1 diabetes and a next-generation treatment for insulin-requiring type 2 diabetes.”

They have amazing things coming down the pike, so I was super excited to speak with them:

Tell our readers about ViaCyte. What’s the company’s mission and story?

Dr. Jaiman: ViaCyte is at the forefront of regenerative medicine approaches to develop a functional cure for type 1 diabetes (T1D). We have cell replacement therapies for pancreatic islet cells contained in a small retrievable pouch implanted under a patient’s skin.

The therapy is designed to enable insulin and glucagon (the counter-regulatory hormone that treats low blood glucose) production with the implanted cells to effectively control blood glucose levels, decrease the risk of hypoglycemia, and mitigate short-term and long-term diabetes-related complications for patients.

What is exciting is that ViaCyte is the first company to advance human stem cell-derived islet cell replacement therapy capable of producing insulin in the clinic, backed by two decades of research and expertise.

We are further augmenting our therapies by optimizing both the delivery device and the cells through collaborations with industry leaders, including W. L. Gore & Associates (the makers of GORE-TEX) and CRISPR Therapeutics.

Our mission is to develop cell replacement therapies offering long-term treatment to decrease the burden of the constant management needed with T1D.

What led you to your work at ViaCyte?

Dr. Jaiman: A significant focus of my medical career has been the integration of technology and medicine to advance treatments that can change the paradigm of diabetes disease management.

My experiences both in research and actively seeing patients with T1D have given me first-hand experience in seeing the daily work required to achieve any form of glycemic control as well as the burden patients and families face from complications from hypoglycemia or DKA.

I have also been able to see the importance of innovative approaches in addressing their needs. When I looked at the ViaCyte technology, I immediately saw great potential in their regenerative medicine approach to lessen the burden of disease and improve quality of life.

Mr. Daniels: Throughout my time in the industry I have been extremely fortunate to be able to work with innovative companies advancing potential, game-changing therapies for difficult-to-treat diseases. I was attracted to ViaCyte because the bar is set high; ViaCyte is looking to develop functional cures for diseases and is not just treating symptoms.

I also believe in the potential of cell replacement therapies and that these will be a meaningful new chapter in the advancement of medical treatments.

In ViaCyte, I have also found a team of extremely gifted and dedicated scientist-coworkers who are all generous with their knowledge and completely aligned in the mission to deliver a functional cure to the type 1 diabetes community.

It is exciting to be the first company to evaluate human stem cell-derived islet cell replacement therapy for its potential to functionally cure type 1 diabetes in the clinic.

Manasi Sinha Jaiman, M.D., M.P.H., Vice President of Clinical Development and Mark Daniels, Senior Director of Clinical Development

Manasi Sinha Jaiman, M.D., M.P.H., Vice President of Clinical Development and Mark Daniels, Senior Director of Clinical Development

What exciting new developments is ViaCyte currently working on?

Dr. Jaiman: Currently, ViaCyte has two clinical cell replacement therapy candidates. First, VC‑02 PEC-Direct is a treatment comprised of pancreatic islet cells in a pouch designed to allow blood vessels to enter the device and directly interact with the implanted cells to produce insulin and glucagon.

This treatment candidate is targeted for those with high-risk type 1 diabetes (hypoglycemia unawareness) able to tolerate immunosuppression.

In contrast, our groundbreaking VC‑01 PEC-Encap device is an advanced treatment comprised of pancreatic islet cells in a pouch that fully encapsulates the cells preventing immune cells from interacting with the implanted cells, which eliminates the requirement for immunosuppressants.

We are collaborating with W. L. Gore & Associates to optimize their innovative membranes which encapsulate the cells in our implanted devices. We expect to share clinical data in the second half of 2021.

Anything new in the pipeline that people with diabetes should be especially excited about?

Dr. Jaiman: One of the challenges with cell replacement therapies is to protect against adverse reactions and rejection of implants by the body’s immune system, which serves as a defense mechanism against foreign bodies.

In collaboration with CRISPR Therapeutics, we are employing gene-editing technology to engineer cells to avoid recognition by the immune system. Our partnership is focused on advancing gene-edited allogeneic stem cell-derived therapies from discovery through commercialization with the goal of developing a potential next-generation functional cure for all insulin-requiring type 1 and type 2 diabetes.

Mr. Daniels: With our preclinical candidate, VCTX210 PEC-QT, pancreatic islet cells would be in the same pouch as PEC-Direct, allowing the implanted cells to interact directly with blood vessels, an approach intended to enable robust and consistent engraftment.

Yet by designing the cells to be immune-evasive through CRISPR Therapeutics’ gene editing we would expect to eliminate the need for immunosuppressants as are required with PEC-Direct. We look forward to sharing more about this unique program in the future.

Photo credit: ViaCyte

Where do you envision ViaCyte and people’s lives affected by diabetes in five years? Ten years?

Mr. Daniels: This year marks the 100th anniversary of the development of therapeutic insulin to regulate blood glucose, yet dependency on tedious insulin injections are still a common course of treatment for many living with type 1 diabetes.

Within the next five years, we envision delivering significant progress in later clinical-stage studies with increased time in range, reduction in hypoglycemic events, and reduction in (or elimination of) the need for insulin injections in patients following our cell replacement treatments as we move toward making these therapies more widely available.

Dr. Jaiman: Within five years, we expect to be moving through the final phases of our regulatory process for our human stem cell-derived islet cell replacement therapy enabling availability more broadly for patients with type 1 diabetes.

It is our hope that within a decade, cell replacement therapy will offer longer-term treatment, easing the burden of constantly monitoring blood glucose. A functional cure will no longer be a dream, rather, a reality.

Is the ever-elusive cure on the horizon? A functional cure?

Dr. Jaiman: Yes, we believe a functional cure is on the horizon!

ViaCyte is focused on advancing cell replacement therapies toward a functional cure with a combination of implanted cells and device engineering.

This cell replacement therapy could represent insulin production protected from the immune system in a way that totally mitigates the underlying disease. Our technology is designed to safely implant the missing cells that make insulin and glucagon – that’s the breakthrough that gets us to the functional cure.

How can people with diabetes get involved or learn more?

Mr. Daniels: As ViaCyte is advancing novel treatments for type 1 diabetes, our team has been very fortunate to collaborate with multiple incredible research and advocacy organizations, including the Juvenile Diabetes Research Foundation (JDRF), Beyond Type 1, and California Institute for Regenerative Medicine (CIRM).

These organizations are focused on education and support for finding a cure for diabetes with resources for both patients and researchers on their websites. A great resource is the website www.clinicaltrials.gov – by typing “ViaCyte” into the search window, you can find more details regarding our ongoing clinical trials.

This includes details about the entry criteria to participate as well as the geographical locations of the sites (to find the one closest to you) and contact details necessary to reach out and connect with the study site team to learn more about what is involved in the study participation.

Photo credit: ViaCyte

Anything else you’d like to share?

Dr. Jaiman: Insulin treatment has largely transformed type 1 diabetes from a fatal illness to a chronic one, yet it is not a cure. At ViaCyte we recognize the long journey in the evolution of diabetes management, and we are keen to deliver a solution that offers real hope for a functional cure for type 1 diabetes.

Every single member of our team is passionate and dedicated to this endeavor. Managing diabetes can be difficult at any time, however, this past year has highlighted the need for accelerating therapeutic advancements to help reduce COVID-associated morbidity and mortality in the vulnerable population with diabetes.

With the pandemic still ever-present, we believe our mission of realizing a functional cure is even more critical for patients as they navigate living with a chronic disease during this very trying time. Our leadership team is wholly focused on improving patient care with an eye to the future.

Mr. Daniels: I am very appreciative of the Diabetes Daily team for providing this forum to connect to their community. The stories of family member’s and loved one’s experiences (including those of some of our own coworkers) with T1D resonate clearly within us and fuel our motivation behind the work we do.

It is only through the support of the T1D community and especially the valued study participants that we are able to advance this important research.

We are proud to be part of the biotech and biopharma community advancing some of the world’s most promising medical devices and therapeutic treatments. We look forward to sharing more details regarding the value of these treatments in the clinic.

Source: diabetesdaily.com

Screening for Type 1 Diabetes

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

If you have a relative with type 1 diabetes, you may be at higher risk of developing the disease, making it imperative that you get screened. There are now simple blood tests that can determine your risk of developing type 1 diabetes before symptoms occur. Not only are there significant benefits to early detection, but as undiagnosed type 1 can be fatal, screening saves lives. Benefits to getting screened for type 1 diabetes (T1D) include:

  • Detecting T1D early reduces the likelihood of Diabetic Ketoacidosis and Hospitalization at diagnosis.
  • Opportunities to participate in clinical trials to prevent or delay the onset of T1D for years after screening
  • Knowing your results gives you peace of mind and time to prepare

For more information on the benefits of screening check out this interview with JDRF Director of Research Frank Martin and read 5 Reasons to Get Screened for Type 1 Diabetes.

Learn More About Screening Options

T1Detect From JDRF

Mom

Image source: Beyond Type 1

T1Detect, JDRF’s screening education and awareness program, will arm you with the information you need before and after getting screened for type 1 diabetes autoantibodies. Until now, T1D symptoms and a diagnosis often come out of the blue. Today, families can use testing to detect T1D early so they can plan and prepare. With one blood test, anyone at any age can find out—before symptoms even occur—if they are at risk for developing T1D. The test is easy, simple and can help save lives. Everyone, regardless of relation to someone with confirmed T1D, is eligible.

TrialNet

TrialNet

Image source: Beyond Type 1

If you have a relative with T1D, you’re in a unique position to help us learn more about the disease and how to prevent it. Offered through the TrialNet Pathway to Prevention Study, risk screening uses a simple blood test that can detect your risk of T1D years before symptoms appear. If you are in the early stages of T1D, you may be eligible for a prevention study. Take the first step and get screened.

Read the Latest Screening News

T1Detect is a new screening initiative designed to make early detection of type 1 diabetes easier and more accessible to a broad population. More

New Evidence Shows Vital Importance of Screening For T1D in Children

Kid

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By screening for type 1 diabetes in children, Bavaria was able to decrease rates of diabetic ketoacidosis at diagnosis. More

Firsthand Screening Accounts

Knowledge is Power: Screening for T1D

Family

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After their first daughter was diagnosed with T1D, the Brzozowski family decided to have their youngest child screened, and discovered that she would eventually develop Type 1 diabetes. More

My Decision to Get Screened for T1D

Family

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Jorge Aguilar’s mom has had T1D for his entire life; he explains his decision to be screened for T1D antibodies and offers advice to others who are considering being screened. More

Source: diabetesdaily.com

Athlete & YouTube Sensation: Elijah

Tandem Diabetes Care Pump

This content originally appeared on Tandem Diabetes Care’s blog. Republished with permission.

Elijah is 11 years old and doesn’t let diabetes slow him down — not while pounding the pavement running cross country, and not while playing basketball, football, baseball, or his favorite, golf.

Having spent most of his life with type 1 diabetes, Elijah is a pro at overcoming challenges and adapting. He started on an Animas pump at four years old, then later switched to a tubeless pump. With support from his family, all of this change was manageable.

What Inspired Elijah to Try a Tandem Diabetes Care Pump?

One day, Shawn, a family friend and Tandem Diabetes Care team member who met Elijah the day he was diagnosed ten and a half years ago, proposed the idea of switching to a Tandem pump, but Elijah was reluctant. Elijah liked his current pump. Plus, he still had lingering worries from when his dog grabbed on to his tubing when he was four years old.

“Elijah did not want to switch,” explained mom, Molly. “And we understood, change is hard. He does a great job, but things were not going in a direction we felt good about… he was doing well, considering diabetes is a tough disease, but he had three consecutive A1c results, each higher than the one before it.”

Elijah wasn’t satisfied either. “My first experience wearing and using a pump was great, but I was always going really high and low. My blood sugars were not controlled well,” he explains. It also made some of his favorite activities more challenging, “My blood sugar, especially during baseball, would go low.”

The innovative Control-IQ® technology available for the t:slim X2™ pump piqued his parents’ interest. Around this time, they also moved in next door to Shawn. This created an opportunity for Elijah to get the feel of a Tandem pump, without an infusion site. He wore one around as a test drive of sorts.

Known by his family as a “numbers guy,” Elijah was really interested in the tech and advancement, and his parents reminded him that his body awareness had improved since he was four. They were optimistic the tubing would be less of a challenge, and it was a perk that the t:slim X2 pump offers a variety of infusion set choices.

It didn’t take long before he told his parents, “OK. Let’s do it.”

In October 2020, Elijah officially made the leap. He adjusted with help from some “diabesties” (friends in the diabetes community) and essential mentor, Shawn. By November, he was enjoying his newfound freedom.

“Everyone needs a Shawn,” exclaims Molly. Having that person, whether it be a diabetes educator or Tandem representative, can be an essential part in bridging the gap in “pump 101.”

Tandem Diabetes Care Pump

What Does the Family Love Most About the t:slim x2 Pump?

Elijah’s pump has settings for activities like Exercise and Sleep that can adjust basal rates and deliver automatic correction boluses, and it’s helping him focus more on his sports. “Putting my pump on the Exercise setting makes a big difference.” Whether he’s up to bat or sinking a hole in one, his blood glucose levels are on his mind a little less often these days.

“I sleep all night now,” says Molly, who loves the Sleep feature. “I can’t remember sleeping through the night before.”

These days, Elijah can go to bed at 200 mg/dl and wake up in the morning at 90 mg/dl–now that he wakes up with better numbers, it sets the tone for the rest of the day. After-breakfast spikes are also less likely. Molly describes the switch to Tandem like many often do, “It’s been a game changer.”

After trying a couple different infusion sets, Elijah has found his favorite, the TruSteel, which is rigid and is inserted manually. “He likes it because he controls it going in,” explains Molly. Elijah found that the automatic insertion of this tubeless pump would cause him anxiety each time it was changed. He counted every click in anticipation and was bothered when the timing differed from insertion to insertion.

“I was a little scared of tubing at first, but I don’t even notice it anymore,” says this active guy.

After a few months of use, it was time to see the endocrinologist. Starting at a 7.6 A1c in October, Elijah had achieved an impressive 6.8 by January. While they wish they would have made the switch to the t:slim X2 pump sooner, Molly wanted to wait until her son felt he was ready.

“As a parent, it changes the diabetes game 100%.” Molly goes on to say she knows that highs and lows are still possible, but are far less extreme with Control-IQ technology. When asked who, in her opinion, is a good candidate for a Tandem pump, she replied, “Anybody with type 1—if I was diagnosed tomorrow I’d go on one.”

Tandem Diabetes Care Pump

What Is Elijah Working on Now?

As for Elijah, his focus is on other things. He is hard at work on his own YouTube channel, Diabetic Dude, which features feel-good content and messages about diabetes awareness. “I mainly started to show people what type 1 diabetes is. It’s a serious disease, but I want to show people I can still do everything normal. I’ve started making more fun and hilarious videos.” He hopes his channel becomes lucrative, so he can donate proceeds to JDRF, a nonprofit 501c organization that funds type 1 diabetes research.

“I feel like he has more freedom, I feel like he can be a kid,” Molly says, excitedly explaining how nice it is that he can just have a popsicle at a friend’s house if he wants one. Elijah and his family have only good things to say about other diabetes devices, but Tandem has brought them to that next level of diabetes achievement. They leave us with this insight about Tandem, “The tech is just better. “

We thank Molly and Elijah for sharing their story and wish Elijah a very happy 1-year anniversary of Diabetic Dude! Check out his channel and be sure to subscribe!

Tandem Diabetes Care Pump


 

Responsible Use of Control-IQ Technology

Even with advanced systems such as the t:slim X2 insulin pump with Control-IQ technology, you are still responsible for actively managing your diabetes. Control-IQ technology does not prevent all high and low blood glucose events. The system is designed to help reduce glucose variability, but it requires your accurate input of information, such as meals and periods of sleep or exercise. Control-IQ technology will not function as intended unless you use all system components, including your CGM, infusion sets and pump cartridges, as instructed. Importantly, the system cannot adjust your insulin dosing if the pump is not receiving CGM readings. Since there are situations and emergencies that the system may not be capable of identifying or addressing, always pay attention to your symptoms and treat according to your healthcare provider’s recommendations.

From time to time, we may pass along suggestions, tips, or information about other Tandem insulin pump user experiences or approaches to the management of diabetes. Please note, however, individual symptoms, situations, circumstances, and results may vary. Please consult your physician or qualified healthcare provider regarding your condition and appropriate medical treatment. Please read the Important Safety Information before using a Tandem Diabetes Care product.

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

Losing Body Fat with Type 1 Diabetes The “Right” Way

Within 5 minutes of reading any diabetes blog or perusing through any Diabetes Facebook group, you will probably find more biased, scientifically unsupported diet advice than a poorly thought out midnight infomercial.

“Keto is best!”

“No, plant-based is best!”

“Wrong, apple cider vinegar and intermittent dieting is best!”

With so many opinions and biases, how, as people with type 1 diabetes, can we decide on the “right” diet?

Let’s get this out of the way quickly—there is no one golden way of easy results for everyone. Why? Because everyone is different with different goals and value sets and needs to achieve their individualized quality of life.

So when you are searching for the “right” way, just make sure that you are considering what is right for you in the sense of being able to adhere to it for a long period of time, making sure that it doesn’t make you miserable, and assessing the effectiveness toward your goals. The right way will accomplish those three things for you as long as you continue to put in the work.

The “Right” Blood Sugars

As people with diabetes, we can probably all agree that there are effective and ineffective blood sugars. We can’t be hypoglycemic before an activity as that will likely put us in danger and being hyperglycemic can reduce performance, affect function, and become dangerous as well. So, when it comes to fat loss, is there a “right” blood sugar?

Yes and no.

Of the hundreds of people with diabetes I’ve helped to lose thousands of pounds total, blood sugar management comes first.

If you are chasing blood sugars constantly, your diet will reflect that and your training will likely suffer, resulting in a negative cascading effect, leading away from progress.

I’ve found that we can tend to brush off the importance of getting better with our blood sugars (I’m also talking to myself here), because we want to lose fat and show people how hard dieting is, and prove our dedication to other people. But by skipping blood sugar management, we essentially toss all our hard work into the wind and hope for the best.

If you truly want to progress your physique and performance, you have to start asking the right questions:

  • How is this activity going to impact my insulin sensitivity?
  • Am I checking my sugar enough, especially when I start a new diet or exercise program?
  • Am I taking into account how much insulin on board I have before I exercise?
  • Am I talking with my diabetes management team to make sure that my insulin needs are adjusted with my diet and activity levels?

When things change, things need to change yet we tend to fall into the same rut of diabetes management.

Make sure you take into account your new level of intensity and duration and exercise as well as your caloric intake and specific nutrient intake to make sure that your insulin needs are optimized toward the new stimulus you are giving your body by starting a new exercise or diet program.

Here is a chart from JDRF PEAK showing the different blood sugar trends around varying types of exercise. This can help you plan your management accordingly.

Image credit: JDRF

The “Right” Nutrition Plan

All successful diets in terms of fat loss share one pivotal concept—burning more calories than you consume. For you to optimally lose body fat, you have to be in a calorie deficit regardless of whether you are eating keto, vegan, Whole30, or the “broke college kid diet”. It’s not opinion either, it is just the law of thermodynamics.

In abundance, you gain. In deficit, you lose.

So, the right nutrition plan puts you in a moderate caloric deficit where you aren’t starving or medically unsafe but you are also not eating enough to maintain your current weight (after all, what would be the point of that?).

Now, the right plan also has to account for adherence and not making you miserable.

If you truly enjoy carbs and you can manage your sugars well on a moderate- or high-carb diet while still in a caloric deficit, most likely a keto diet will make you miserable and will not be the right fit for you. While both a high-carb diet and a keto diet could be equally effective at losing body fat when equated for calories, we also must consider the real-life implications of quality of life during dieting.

The right diet is something that you can adhere to while also managing your blood sugars and at the same time putting you in a moderate caloric deficit so that you can continue to progress.

You can individualize your nutrition so that you can adhere to whatever kind of eating preferences you like, as long as you can maintain your blood sugars simultaneously.

Some people prefer low-carb, so that it minimizes blood sugar fluctuations.

Some people prefer high-carb and can still manage blood sugar fluctuations.

Regardless of what you choose, the fact remains that you have to stick with it consistently and you have to follow the rules above.

The “Right” Workouts

Personally, I love lifting heavy weights. Also personally, I hate when a coach tells a client that they have to work out the same way that they do.

There are many successful ways I have helped people with diabetes incorporate new workout programs:

  • Walking and progressing to walking with weights
  • Sprinting and high-intensity interval training (HIIT) workouts
  • Bodyweight and resistance band training
  • Water aerobics
  • Olympic weight lifting and bodybuilding
  • Walking your dog and doing 10 Squats every 5 minutes during that walk
  • Working out does not have to mean going to a gym. You can work out exactly where you are, even if you’re in an office just by standing up and sitting down a few times, despite maybe looking a little awkward.

There are three aspects of working out that are considered important and I try to encourage every person to incorporate each of these aspects into their program to have a more well-rounded approach:

  • Resistance training (added weight or bodyweight exercise)
  • Cardiorespiratory training (walking, jogging)
  • Flexibility (stretching yoga, etc.)

So whether you go to the gym and lift weights, or pick up a gallon of water and press it over your head, walk your dog every day and finish up with some stretching, if you use these three concepts and incorporate movements or activities that you like, you’ll find yourself doing the “right” workouts.

Now, extremely successful workouts involve a concept called progressive overload— that simply means that whatever you’re doing will eventually stop working if you keep doing the same thing over and over without any change or progression.

So my advice? Progress. If you walk 20 minutes every day maybe next week walk 25 minutes one of those days or even add five minutes to every day. If you constantly do the same exercises maybe change up the exercise or add weight or change how many repetitions that you do.

Change requires change.

Progression requires progression.

FitMeT1D Challenge

A Free Solution That Might Be Just “Right”

Over the last four years, I have worked with hundreds of people with diabetes and I found a creative way to build a community for free of just people with type 1 diabetes all working together towards a four-week fitness challenge called the Fit Me T1D challenge.

I provide our hundreds of members a modifiable exercise plan with an easily individualized and adaptable nutrition guide as well as a bunch of extremely helpful tips and tricks around diabetes management.

All of this happens in a private Facebook group and your fellow T1D members help you every step of the way.

It’s fun.

It’s challenging.

And hey—it’s free.

I feel like it’s my duty to give back to my fellow type 1s so if you’re interested in joining, we have our next challenge starting March 22nd. Feel free to sign up for free on FitMeT1D (more info at the link as well).

Source: diabetesdaily.com

When You Can Expect to Get Your COVID-19 Vaccine

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

By Lala Jackson

We now have two FDA-approved and safe COVID-19 vaccines in the US! So as a person with type 1 diabetes, you may be wondering when you can get yours.

The answer? Unclear. It’s all a bit of a logistical mess right now, but here’s what we do know – when you are able to receive your COVID-19 vaccine is dependent on your age, your specific health history (not necessarily whether or not you can check the ‘type 1 diabetes’ box on a form), the state and county in which you live, your employment type, and your healthcare provider’s recommendations.

Overall, having type 1 diabetes does not seem to put anyone more at risk for contracting the novel coronavirus, but other factors like older age, high-exposure employment, consistently elevated blood glucose levels, or other non-diabetes related health factors like obesity and hypertension may increase your risk of infection.

However, we also know that diabetes care itself is made far more complicated after contracting COVID-19 and protecting anyone with diabetes from COVID-19 is our ultimate goal. That’s why Beyond Type 1 has signed onto calls to action urging equal prioritization and is working closely with JDRF, the ADA, and other diabetes patient organizations to advocate for all people with diabetes to be included in Phase 1c of the CDC’s immunization recommendations.

Additionally, because vaccine rollout is happening on a state level, individual advocacy at a state level may be more efficient than federal action. In your community, reach out to your state representatives to let them know that people with any type of diabetes should be included in Phase 1c. Utilize JDRF’s COVID-19 Vaccine Access Toolkit for more resources.

The COVID-19 Vaccine Phased Us Rollout

In the US, the vaccine is being rolled out in phases in *most* states. Already, there are inconsistencies that make it difficult to estimate when you might get a vaccine.

Following approval of the vaccines, the CDC’s Advisory Committee on Immunization Practices created a set of rollout guidelines they recommend for states to follow. These guidelines include phased recommendations for which groups of people should be prioritized to receive the COVID-19 vaccines based on risk factors like older age, underlying health conditions, and lines of work that expose them to COVID-19.

Phase 1a is in process, having begun in December 2020 immediately following the approval of the COVID-19 vaccines in the US. It includes frontline healthcare providers and residents of nursing homes, where COVID-19 cases and deaths have been dramatically highest.

Phase 1b is happening in some states already, includes people over the age of 74, and expands to more frontline workers, including first responders, food and agricultural workers, U.S. Postal Service workers, manufacturing workers, grocery store workers, public transit workers, teachers, and child care workers.

Phase 1c is also happening in some states already, while still several months out others. This phase includes people over the age of 64, anyone else aged 16 or above with medical conditions that increase the risk for severe COVID-19*, and all other essential workers, like those in transportation and logistics, water and wastewater, food service, construction, finance, information technology and communications, energy, legal, media, public safety, and public health workers.

Note that Phase 1c is a BROAD group of people, and this is where things get a bit fuzzy. It is up to each state to control rollout. Many states are following the CDC’s recommendations quite closely, some are following them but not precisely (grouping some phases together, accelerating others), and some have created their own systems, often down to a county-by-county basis.

*What Does This Mean for People With Diabetes?

For people living with diabetes who are not otherwise prioritized because of age or employment type, Phase 1c is the one to look at carefully. As defined by the CDC, people aged 16 or over with medical conditions that increase the risk for severe COVID-19 are included in this phase. But what medical conditions are included?

Short answer – it’s in flux and it depends entirely on your state. Important to remember is that the CDC’s recommendations are just that – recommendations. They have very purposely created guidelines to inform rollout based on most recently available data on high-risk medical conditions, but their guidelines are not meant to be absolute law.

Currently included in Phase 1c recommendations are people with the following conditions: cancer, chronic kidney disease, sickle cell disease, COPD, Down Syndrome, heart conditions, weakened immune systems, obesity, pregnancy, smoking, or Type 2 diabetes.

This means that for those with type 1 or any type of diabetes other than Type 2, you are possibly, depending on your state, not included in the initial rollout and may need to wait to receive your vaccine with the general population, which is likely to be in April 2021 or later.

But don’t panic – as we’ll explain further below, you may still be able to receive the vaccine earlier, based on state or based on your specific health history.

Type 1 Diabetes + COVID-19

Type 1 diabetes itself is not likely to make you more at risk of catching coronavirus. While some have pointed toward the callout of people with immunocompromised systems being in Phase 1c, it is important to remember that having an autoimmune disease (where the immune system attacks itself) is not the same thing as being immunocompromised (where the immune system is susceptible to outside illnesses).

However, other factors associated with T1D may increase your risk of more intense symptoms and severe complications, and if you have to get hospitalized for COVID-19, diabetes care becomes dicey.

This is a piece that has been very confusing and not communicated as clearly as it could be throughout the pandemic – the factors that make a person with any type of diabetes most at risk catching coronavirus and for experiencing severe symptoms and complications of COVID-19 are systemic racism (like being denied or not believed when care is needed), healthcare access issues (like not being able to see a doctor for non-COVID care when needed, or not being able to afford medications and supplies because of job or healthcare loss), consistently elevated blood glucose levels, recent diabetes ketoacidosisjobs that increase exposure to COVID-19, etc.

Type 1 diabetes combined with these factors does create elevated risk. But well-controlled type 1 diabetes on its own does not seem to make someone more at risk of severe illness from COVID-19.

A few studies have raised concerns that outcomes for people with type 1 diabetes who get COVID-19 are far more severe than a person without diabetes, but digging into those studies provides clarity on what’s actually being shown.

  • In May 2020, the UK’s health system released numbers showing severe hospitalization and death rates for people with diabetes. It sounded scary, but what it did not clarify was that additional risk factors like heart disease were of great impact to outcomes, and that the study actually showed that people with type 1 diabetes and no other underlying risk factors like older age or other health history actually did quite well – they were not frequently hospitalized for COVID-19 and those who were had low frequencies of severe outcomes.
  • In December 2020, a similar study was released in Diabetes Care, with a headline saying that COVID-19 severity is tripled in the diabetes community. But again, what it did not immediately clarify was how much the severity was dependent on additional factors, like race (due to long-standing systemic racism), elevated HbA1c, hypertension, lack of diabetes technology, lack of health insurance, less diabetes technology use, etc.

Another study that shows these risk factors well was published in July 2020, outlining the fact that older age and other health-related risk factors were more impactful on severe outcomes than diabetes itself, particularly type 1 diabetes.

Overall, yes – anyone living with diabetes of any type needs to pay careful attention to their health amidst this pandemic. The safest thing anyone can do is practice safety measures to avoid getting COVID-19. For those who cannot – essential workers or people who otherwise have to be exposed to the virus – or those with other underlying health factors, those are the most important factors that must be taken into consideration for priority vaccination.

But just having type 1 diabetes alone, if you are otherwise healthy and not significantly exposed to the virus, should not give you reason to panic. Perhaps more important is ensuring everyone in the general public gets vaccinated as quickly as possible so that diabetes care can be safely accessed, and so hospitals and ICUs are not overwhelmed by COVID-19 patients in the event of emergency diabetes care needs.

How You Get Your Vaccine

Look up your state health department’s guidelines. If it is unclear or you are unsatisfied with what you’ve found, go ahead and reach out to your healthcare provider. Particularly if you have a healthcare provider like an endocrinologist who helps you take care of your diabetes, they may have some insider information on how their hospital or practice is planning to distribute the vaccine.

Remember to be kind and patient – healthcare providers are carrying an immense amount and they may not have an answer for you immediately.

Every vaccine taken decreases the risk and prevents the spread of COVID-19. While it is frustrating to watch the logistical mess, the more people who get vaccinated quickly the better, and in the meantime, continue to practice safe measures that protect you and your loved ones from COVID-19, including doing your best to keep tight control of your blood sugar levels, wearing a mask and physical distancing from anyone outside of your household, and avoiding indoor gatherings.

Source: diabetesdaily.com

Toddler Changes His Own Dexcom on TikTok: Advice From His Mom

TikTok has become more than just a place to dance along to the latest trend; it has become a platform for advocacy for many issues, and diabetes has received increased exposure thanks to this social media app. I couldn’t believe my eyes when I saw a TikTok of a very young boy putting on his own Dexcom G6! And he did it with confidence, bravery, and pride. I wanted to share Daxon’s story in the hopes that it inspires others as well. I reached out to his mom who was gladly happy to chat.

Hi Cassie, thank you so much for taking the time to answer my questions! I would love for our community to get to know Daxon a little better! He is such a great role model for other children living with type 1 diabetes (T1D)!

At what age was Daxon diagnosed and what were the symptoms?

Daxon was diagnosed exactly 1 month from his second birthday at 23 months old.

He started to get a bad temper spring of 2019 and we never understood why. He would get so upset so easily and we just thought it was because of terrible twos. In July, he threw up twice one morning for no reason and out of the blue. He started throwing up at nighttime multiple nights in a row and only at night. I took him to his pediatrician, and they told me “it’s probably the stomach bug, it’ll pass” but I told him “but randomly like that? It doesn’t make sense”.

After about two weeks, it stopped until August. He threw up one more time in the morning and then stopped. Once again, we had no idea why. At the end of August he started drinking and peeing excessively. What really gave it away was that he was drenched from head to toe in pee after a 2-hour nap period one day and that was it. I checked his sugar and it was 461 mg/dL (borderline DKA).

How did you as a family adapt to your new normal?

Honestly, we are still trying to adapt. We take it day by day because it is always changing. The one thing about diabetes is that no matter what, it is different each day. Even if you do the same exact thing, sugars will change.

Did you change Daxon’s and/or your family’s diet at all? What are his favorite go-to foods that don’t wreak havoc on his blood sugars? I’m sure lots of moms could use some tips!

I did not completely change his diet, but I do swap stuff out for healthier carbs and a lower glycemic index. He does low-carb bread, cheese, and crackers instead of mac-n-cheese, Go-Gurts, Two Good yogurts instead of the higher-carb ones, chicken meatballs instead of chicken nuggets, Fairlife milk instead of others  (because of his milk allergy, but it is better carb-wise also), keto-friendly cereal because others spike so much that I cannot get it down for hours, keto-friendly bread only because the GI level is so much better. There are some other changes, but the family has not changed any really. He does still eat candy, it is just more in moderation than before.

His go-to foods are pork rinds eggs, a brownie bar called “Good to Go”, keto-friendly ice cream, yellow bell peppers, broccoli, really any vegetable, cheese sticks, pepperoni, lollipop suckers. Any time we are out Chik-fil-A, grilled chicken and fruit are a must. That is all I can think of right now.

Photo credit: Cassie Daniels

At what point did you start using the Omnipod and Dexcom G6? How did Daxon handle that? 

The Dexcom was a month after being diagnosed and he did not handle it well at first. We would have to hold him down to get him to let me put it on. It was a nightmare but once he watched a friend of ours put her’s on and she told him “you have a robot just like me” he got used to it and now it is normal. When his phone tells us it’s time to change it, he’ll tell me “robot needs changed” and he will 100% do it solo now which is amazing.

The Omnipod was a little different. His first endo wouldn’t approve it because they thought he would take it off, so we had to wait but once we switched to a different hospital, they got him on it right away; so, he was about 7 months in when he was able to get the pod. At first, once again — NOT a fan and it was horrible — but once he learned it meant “no more shots” he was perfectly fine with it (sometimes). We will scream — and I mean scream  — the song “Baby Shark” so he will not hear the clicking for the needle and that seems to help also. He is currently working on putting the insulin in his pod so he is super excited about that.

I know I personally prefer shots, but am often intrigued by the control some pumpers get. Do you find using the pump helps make blood sugar management easier?

The pump for us personally is a lot better for different reasons. Omnipod allows such a small dose, so even 1 gram of carbs he would get some insulin, but with shots, we would have to round up or down, which meant [more fluctuations for him]. Also, in the middle of the night, being able to give him insulin without even touching him has been great. I hated waking him up to poke him with a needle. Also, when on the go we can dose from the front seat of the car. However, if he ever decides that he wants to stop the pump and go back to shots I will support him and what he wants 100%.

@cdaniels2015

95% completely solo 💙💙💙💙 He’s get the hang of this soooo quickly 😭🙏💙 #typeonediabadass #BigBoy

♬ Bang! – AJR

I couldn’t believe my eyes when my diabestie, Hillary Emmons,  sent me this TikTok of Daxon changing his own Dexcom! I am so impressed and inspired! At what point did he express interest in doing that?

After about six months of being a type 1, he has always been curious about everything. He has been checking his own sugar with the meter since about 6 months in when needed to be checked. And recently he was really showing interest in the Dexcom and doing it solo. He did half of it one day and then the next change he did it completely on his own, all I did was hold it and help place it. I never asked him to do it because I didn’t think he was ready for that task yet but that day he told me “I do it” and that was it. Now he is showing interest in some of the Omnipod stuff, which is amazing because he feels in control.

I give you credit as a parent for letting him own his management and giving him the confidence to know he can manage his disease! What would you like to tell other parents about how to get children to want to be a part of their daily care?

Make it positive, make it fun, and make it normal. We have the JDRF bear and we practiced on that since being diagnosed. At first, we used it so he could understand more of it. We also got his big brother and all the other family members involved since day one. We check everyone’s sugars, so it is normal for everyone. All the children in our family (our boys and our 3 nieces) have been very curious about it since day one.

I see you are using TikTok as a platform for awareness and this one video alone got over 103,000 likes! Kudos! What would you like people to take away from your videos?

I want people to know the signs of T1D and to normalize it. I hate when I see people hide that they check their sugar or even giving their self insulin. I want to help parents have a voice for their children because doctors sometimes do not listen, and we need to be loud for our children and to follow their gut. I have a lot of people say that he encouraged their children to try putting the Dexcom on solo and I love that it is helping other children also. One of my TikToks potentially saved a child from dying. Her sugar was almost 1000 mg/dL and she was in DKA and doctors were surprised she wasn’t in a coma. Children should not die for people [not being able] to figure out what is wrong!

Does Daxon enjoy making the TikTok videos? I think “injecting” some humor and fun is the best medicine of all! And one you can all do together as a family!

Daxon loves showing people his stuff. He knows it makes him unique and he loves seeing others who are like him. So, when people duet his videos and they show their Dex or pod it’s helpful for him also to see that there are others like him.

Photo credit: Cassie Daniels

What else does Daxon like to do with his free time when he’s not managing his diabetes and TikTok’ing?

Daxon is a typical boy and I mean ALL boy. He rough houses with his brother, loves to color, help with dishes, cooking, loves to read books, play outside, ride his 4-wheeler, and absolutely loves cuddling with me. I think him being a T1D made our bond even stronger.

How does Daxon feel about being a TikTok sensation and knowing that he is helping to inspire many other children just like himself!

I have told him many times that he is helping other children and I don’t think he really understands what it means yet, but he always smiles and says “they have a robot like me” or he’ll go “yay that makes me happy”. I ask him “do you want to make a video?” and normally he’ll tell me “yessss let’s make a video”. I will never make him make TikToks so if he tells me no then I’ll leave it alone.

I ask this in every interview! Do you think they’ll be a cure in Daxon’s lifetime?

100% honestly I do not foresee a cure ever. They make way too much money from insulin (when it should be free, but that’s another story for another time). I wish there would be a cure, but I don’t see it happening.

Daxon

Photo credit: Cassie Daniels

What advice helped you? Can you pass it along to parents of newly diagnosed children?

My advice for parents is:

  1. Take one day at a time because it is an always-changing, never-stopping, headache of a disease.
  2. Do your best and never get down on your child for their blood sugars. That is the one thing I will never do to Daxon, anytime he has “bad” sugars, I never express it to him or show it on my face because it is not his fault, so I don’t want him to feel like he is failing.
  3. Always tell your child they can still do anything they like and never change activities. Just change foods to help [manage sugars during] the activities. For example, we took Daxon and his brother to a trampoline park and I knew his sugar was going to drop. He started at 170 mg/dL and dropped to 50 mg/dL. I was prepared with milk, yogurt, chocolate, and others, so he could still have fun and be a kid.
  4. Try not to have a fight if sugars are not in range, because everything is magnified if high or low. So what I do with Daxon if he is high or low and has a temper tantrum, I ignore it and let him do what he needs to do. Once he calms down, we discuss what happened and I explain I understand he doesn’t feel good but he doesn’t need to act that way.
  5. Treat them like you would any other child because diabetes does NOT define them.

Where do you see going with your advocacy and awareness on social media or elsewhere? Do you have other plans in the future?

I would love to bring more awareness to this disease. I would love for there to be a law that pediatricians must check A1c every year or every other year. They check your iron, and they check lead so why not diabetes? [Some] pediatricians think that younger children cannot get diabetes until at least six years old which is not true. It is ridiculous because a child’s death is avoidable if people were more aware of the signs and doctors tested when they should.

Thanks again Cassie, we really appreciate you taking the time! I look forward to continuing to follow Daxon’s journey and see how many kids he inspires along the way!

Source: diabetesdaily.com

The New Type 1 Diabetes Detection Program from JDRF

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

By Stacey Simms

Stacey: Tell me more about T1detect.

Frank: T1Detect is an education and awareness program about type 1 diabetes(T1D) and its risks, and a very important component of that is making the [autoantibodies] test available to people. Because right now, they’re not really available to people except in the context of research settings, or as people like you might know, in the context of an actual T1D diagnosis, when someone has super high blood sugar, they’re in the hospital. Then the doctors will do a confirmation test to see if it’s type 1, we want to make it available to people who don’t yet have symptoms. So hence, T1Detect.

You can go and find the test in a couple of different places. First and foremost is the JDRF website, we have access to information and the test kit button on our website through T1Detect. You click the button, it gives you some information about what it is to have T1D, what the risk factors are, what are autoantibodies.

You click the button you go to the Enable portal, fill in some information, we’re asking for your name, mailing address, things like that. We’re also asking for some demographic information, we want to learn who’s getting to the end, who’s at risk, and that’ll help us improve the program going forward. Then you come to a choice where you can pay for the test, the test is not terribly expensive, it’s $55. To run the test, plus or minus a couple of taxes, you also have the option if you cannot afford the test to have JDRF [help] pay for the test and you will pay for the bulk of the cost.

Right now, it’s not a feature to ask your insurance company to pay for this, but in the future, it will be. All that being done, the test will get sent to you, you’ll get a little box in the mail. It was pretty simple, I did it. You have a Lancet, you poke your finger. Then you fill in two out of four of these circles on a piece of cardboard, let that dry, and send it back. A couple of weeks later, the company will tell you, you have one, two, or three of the type 1 diabetes-specific autoantibodies.

Stacey: What are you testing for?

Frank: Let’s take a little step back to the biology of type 1 diabetes, the biology of autoimmune diseases. Type 1 is an autoimmune disease, and one of the ways we can tell a person who has an autoimmune disease is we can look in their blood for signs and symptoms of that their immune system is doing something that it is not supposed to be doing. In type 1 diabetes, we look for something called autoantibodies.

Now autoantibodies are something that that’s sort of a general term to all different autoimmune diseases. People with multiple sclerosis have autoantibodies, people with lupus have autoantibodies. What we’re looking for in type 1 diabetes are autoantibodies that are specific to type 1 diabetes. What makes them specific to type 1 diabetes is they are specific to things that are in your pancreas. We actually are looking for three of the four primary autoantibodies that have been determined through many many years of research to be very good diagnostics for type 1 diabetes, they’re IAA [Anti-Insulin], IA2 and GAD65. Some people may remember those names from TrialNet or other organizations, but there are three of the four that help us diagnose to end and predict your risk…. Based on those three, if you have two or more of those, we know pretty well that your risk of developing insulin dependence is very, very high. In fact, if you have two or more of those in your blood, you already have type 1 diabetes… you may not be symptomatic, but you already have it.

Watch the full interview below:



Source: diabetesdaily.com

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