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diagnosed with type 1 diabetes: managing support, treatment and complications
9 minute read
keeping your blood sugar levels in a healthy range involves taking the right amounts of insulin at the right times to counteract food intake, exercise, stress, illness and medications and more.
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“i’ve lived with type 1 diabetes for over 35 years now. i think the hardest thing is the day-to-day, keeping yourself motivated to keep going and have your own health at top of mind. that is the most challenging thing. … it’s a chronic disease. it doesn’t stop.”
this comes from jennifer buccino, an expert on type 1 diabetes by personal and professional experience, who heads up diabetes canada’s knowledge and connection team. she provides education, tools, support and resources for people affected by diabetes. she’s also a dietitian by training who worked at sickkids hospital in toronto, among other posts, before joining the national diabetes organization two years ago.
“i was diagnosed with type 1 diabetes when i was 13,” she says. “i went into the health field because of diabetes, and then found myself like others through the pandemic, thinking that i need to get back to the passion that i have about helping people with diabetes. so here i am.”
even for a healthcare professional like buccino, who has lived experience and expertise in nutrition, she’s quick to say that type 1 diabetes isn’t easy to manage. for those who are diagnosed with the disease, it can be a steep learning curve with uncertainties all along the way.
an estimated 300,000 canadians have type 1 diabetes, with the number of new cases growing at approximately 4.4 per cent per year, substantially higher than the country’s population growth of 1.0 per cent per year, according to jdrf, the juvenile diabetes research foundation. at this rate, an anticipated 455,580 people will be living with type 1 diabetes by 2040.
while family history is a risk factor, type 1 diabetes is an autoimmune disease where your body attacks the cells in the pancreas that make insulin. anyone can develop it at any age, even if you’re dedicated to a healthy lifestyle.
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bottom line is you need insulin to transport the sugar, or glucose, in your bloodstream to your cells throughout your body to function. without insulin, if left untreated, too much sugar builds up in your blood and causes hyperglycemia, or high blood sugar, which can lead to serious health problems or even death.
here’s how you can manage your type 1 diabetes diagnosis.
learn about type 1 diabetes and reach out for support
“when i was diagnosed, i was a competitive irish dancer and a soccer player, and i thought my world was going to end. but this doesn’t keep you from doing all the wonderful things that you want to do in your life,” says buccino who runs, bikes, swims, skis and competes in mini triathlons.
“diabetes doesn’t hold me back in any way. sometimes, i do things in spite of my diabetes. it’s important to recognize that it doesn’t have to hold you back.”
while she says the diagnosis is life-changing, getting the information and support you need to manage the disease is important to build confidence and capability. keeping your blood sugar levels in a healthy range involves taking the right amounts of insulin at the right times to counteract food intake, exercise, stress, illness and medications and more. plus, everyone’s body chemistry is different, so no two people with type 1 diabetes will react to insulin in the exact same way.
there’s a lot to learn. buccino recommends diabetes canada as an entry point for help and direction with well-informed resource consultants who are available by phone at 1-800-banting (canadian scientist dr. frederick banting discovered insulin with his colleagues in 1921) or email at info@diabetes.ca. no question is off-limits, she says:
“sometimes people are calling because they want the facts, like what’s the best way to check a blood sugar, or how do i manage my eating or physical activity? other times it’s how do i cope with this? how do i afford new devices that i have to purchase?”
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supplies and devices are costly, and each provincial, territorial, private and employer health plan has its own list, or “formulary” of what is covered. diabetes canada provides formulary listings for public coverage of medications across canada, and resource consultants can provide further information and contact numbers
the charity also has a video series, how 2 type 1, that offers 10 short videos covering all the basics about type 1 diabetes, including top tips, types of insulin and how they work, how to minimize risks of low or high blood sugars, and the importance of mental health and self-care.
buccino notes the importance of making personal connections with others who have type 1 diabetes for emotional support and practical advice.
“there’s a whole other expertise from that lived experience. talking to somebody who’s walked a mile in your shoes means a lot. there’s something powerful about connecting. you can hear the same information from your healthcare provider, but when you hear it from somebody who has that lived experience, it’s like that sigh of relief.”
a new initiative is the diabetes canada connect program, running nov. 12 to 18, which is a free virtual event to bring people together and support peer-to-peer learning.
find your care team
connecting with a diabetes program within your community will offer a local hub of support and education. diabetes canada, or your family doctor, can point you to those diabetes clinics that may be located within a healthcare setting with a full team of an endocrinologist (who specializes in diabetes and other metabolic conditions like obesity and thyroid disease), a nurse, a dietitian and a certified diabetes educator, or it may be a diabetes healthcare provider in a community centre.
to meet the demand for specialized care for patients with diabetes, healthcare providers can pursue certification to become a diabetes educator, so nurses, dietitians, and increasing numbers of pharmacists are going this route to have the additional expertise.
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while your family doctor will be your first point of care for diagnosing and helping refer you to specialists, the shortage of family doctors is an issue for many, says buccino. “we’ve seen an emergence of people who are accessing their pharmacies for a good primary point of care. and we’re seeing more pharmacists who are pursuing their certified diabetes educator certification, so pharmacies are becoming a great place to access diabetes information.”
know the importance of treatment and regular follow-ups
symptoms of type 1 diabetes don’t happen until your blood sugars are extremely low or high out of control and your body doesn’t know how to deal with them. your organs can end up starved from that sugar source and your bloodstream ends up overwhelmed with sugars. to get rid of that sugar, you end up with frequent urination and dehydration. and your organs start breaking down fat and muscle to create sources of sugars for survival.
dr. christine ibrahim, an endocrinologist with the scarborough health network in scarborough, ont., sees many patients in a crisis situation in hospitals where they need insulin to save their lives. “they’re dehydrated, fatigued, they’ve got a dry tongue, they’re drinking tons of fluids, they’ve got weight loss despite eating – that collective of symptoms can end up at a tipping point. so they present with this condition called diabetic ketoacidosis, which is a life-threatening condition. that’s how i meet a lot of individuals who are first diagnosed with type 1 where their body just can’t sustain this process that’s going on.”
one new direction for early intervention is testing people with a family history of type 1 diabetes for the production of antibodies in their system that eventually lead to the attack on the pancreas. ibrahim points to the innovative work of trialnet.org, a global network of academic institutions and healthcare professionals who are screening relatives of people with type 1 diabetes and running clinical studies to test ways to slow down and prevent disease progression.
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trialnet researchers are now recruiting participants between the ages of 12 and 35 to test low-dose anti-thymocyte globulin (atg), an immunotherapy, to find out if it can delay or prevent type 1 diabetes in people at high risk of diagnosis. their previous work has shown that low-dose atg preserved insulin production and improved long-term blood sugar control for two years in people who are newly-diagnosed. in canada, sickkids hospital in toronto is one of 22 trialnet international clinical centers leading type 1 diabetes research.
before the creation of insulin, people did not survive long. ibrahim says that empowering patients to monitor and manage the disease with medication, technology and lifestyle habits is critical. and it’s a multidisciplinary team effort to make it happen.
“you want to hit the ground running, make the diagnosis, start them on insulin and make sure that they’re taking that insulin daily,” she says, stressing that routine follow-ups with their healthcare providers are equally important to make sure that blood sugars are nicely in range and make adjustments to doses and insulin types as needed. “you don’t want to see a lot of sugars too high or too low. you want to help them optimize their health as best as possible.”
understand the complications and side effects
experts agree that self-management of type 1 diabetes is challenging because of the immediate troubles that you can run into and immediate harm with high blood sugar, hyperglycemia, or low blood sugar, hypoglycemia, that can be life-threatening. but fluctuating blood sugars over the long-term can affect sensitive organs in the body.
these impacts are divided into microvascular, or small vessel complications, and macrovascular, which are large vessel complications. small vessels would be the eyes, the kidneys, the nerves, and even the nerves that supply the stomach, while the large vessels can affect the heart, heightening the risk of heart attack, heart failure, and stroke effects to the brain, ibrahim notes.
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“these are also complications that can develop over time. and we know from what we’ve seen and what we’ve studied is that early management, early capture, early diagnosis, and early treatment, and getting those sugars to target as best as possible, allow you to reduce the risk of complications. and if you have complications, you can reduce the progression of these complications.”
manage your day-to-day
managing type 1 diabetes is a constant priority and a complex disease. ibrahim says that everyone will struggle with self-management from time to time. acceptance of your disease is part of the answer. “the way to think of this is a journey. you’re not expected to go from zero to a hundred. no one is expecting perfection. that does not exist.”
she also says rely on your healthcare team and surround yourself with family and friends who can help support you. “you want to find what works for you, and tips and tricks to try to make some of that self-management easier.”
dedicated research and development have made significant strides for more ease of self-management. highlights include better acting insulin that may lead to less injections, wearable insulin pumps that replace needles, and continuous glucose monitoring devices so you don’t have to poke your finger multiple times.
“you can simply wear a device that can tell you your sugar at any point in time and it actually does the pre-emptive alerting for you when it’s too high or too low,” ibrahim says. “so it helps you move along this process more seamlessly to allow you more time and ability to do the other things that you want to do and enjoy in your life, not just constantly focus on what your blood sugar is.”
she’s excited about the promise of medications for improving insulin therapy, like the hormone amylin (the injectable form is pramlintide) that is secreted with insulin in healthy people and counterbalances the work of insulin, helping raise blood sugar to make you feel full. it also slows down the absorption of food by your body. using these two medications, amylin and insulin, together means that you need to take less insulin and experience more stable blood sugar levels.
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another therapy now being tested in canada is islet cell transplant. islets in the pancreas contain the beta cells that make insulin. in this procedure, islet cells from the pancreas of a deceased donor are transplanted to form new blood vessels and make the amount of insulin your body needs.
for patients, a big part of type 1 diabetes management is staying informed and having a voice, whether that’s connecting with diabetes canada, as buccino advises, or helping shape research initiatives that will improve treatment. ibrahim points to connect1d canada, as a go-to destination for people living with type 1 diabetes, healthcare providers and researchers to collaborate.
“collaboration honestly is key,” says ibrahim. “when we get out of living in our silos and we work together, we can progress advancement that much faster.”
reach out to diabetes canada for more information.
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