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hawthorne: my mom’s 50-year journey with type 1 diabetes and the urgent case for early screening
“there are some days when everyday responsibilities and annoyances of diabetes are overwhelming. it’s there all the time"
8 minute read
i asked my mom what her message is to others newly diagnosed with diabetes: “get on the insulin pump that gives you your insulin and use the sensor that tells you what your blood sugar is. no more needles and no more finger pricks! and live each day to the fullest.”
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when i was little, i didn’t know that my mom was a master at taking care of her health, injecting herself with needles of insulin and always carrying apple juice in her purse (along with a baggie of oreo cookies) in case she had low blood sugar. she was diagnosed with type 1 diabetes when she was 23 as an energetic go-getter and dedicated elementary school teacher. but coping with diabetes and the possibility of complications like blindness, kidney failure and heart disease, she never thought she’d live long enough to see her daughters grow up and have kids of their own (i’m one of three girls, poor dad)!
her first doctor told her that if she didn’t take care of herself, she would not have kidneys in 20 years. “that was good because it really scared me,” she says.
as an adult, i started to realize what managing type 1 diabetes was all about and how much effort it takes every day. and she didn’t ask for it. type 1 diabetes is a life-long autoimmune disease that stops your pancreas from producing the hormone insulin. that’s a big problem because insulin is what signals your body to use glucose, or blood sugar, for energy and activates your liver to store excess glucose for later use—essential to power bodily functions.
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the discipline of blood sugar management
but my mom was disciplined, out of necessity, to count carbs and prick her finger to test her blood sugar for her insulin shots throughout the day. she continues to do all the right things, including exercise, good sleep habits and a hefty dose of positivity to counter stress (which is also problematic for people with type 1 diabetes). she also co-founded a local branch of the canadian diabetes association to help support others with much-needed information on the disease and a sense of community.
now with more than 50 years of experience living with type 1, she has nerve and circulation issues, but she’s benefited from the advancements in technology and insulin. i asked her what her message is to others newly diagnosed: “get on the insulin pump that gives you your insulin and use the sensor that tells you what your blood sugar is. no more needles and no more finger pricks! and live each day to the fullest.” (i’ve heard that last line a lot over the years, and she means it.)
we went to a diabetes conference where i’ll always remember one of the speakers, an endocrinologist, saying, “if you want someone to be healthy, give them a chronic disease.” true in many ways, and certainly that’s been my mom’s experience. go peppy, go!
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as a health journalist, researching and writing about diabetes always hits me close to home. i’ve seen first-hand what it takes to handle the disease and the frightening times when low blood sugar hits seemingly out of the blue. our bodies are always changing, and no two days of blood sugar monitoring ever look the same. and that’s stressful for everyone.
earlier type 1 diabetes detection ups the odds of long-term health
i do know that the earlier type 1 diabetes is detected and treated, the better the odds of blood sugar control and overall health. for diabetes awareness this month, i jumped at the chance to interview dr. karen mcassey, pediatric endocrinologist at mcmaster children’s hospital in hamilton, ontario, and associate professor in pediatrics at mcmaster university.
she’s a strong advocate for screening for type 1 diabetes in at-risk children and the general population. families with a genetic connection face a 15 times higher risk, making screening an essential proactive step. but 90 per cent of kids living with type 1 diabetes do not have a family history, she says. type 1 diabetes is the most common diabetes in children and adolescents, and the number of people with type 1 diabetes is growing.
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“anyone can get type 1 diabetes,” mcassey notes. “there are genetic and environmental contributors to the development, and the environmental contributors are not well understood. there are also many different genes that affect the likelihood of development, so it’s not a single gene. there are genes that confer susceptibility and genes that confer protection.”
yes, it’s a complex disease. but screening has advanced just as treatment has.
“we think about the importance of screening people who have a family history of diabetes. we think about the importance of screening people who have other autoimmune conditions, because when you have one condition, you’re more likely to have another autoimmune condition. and then we think about screening for the general population.”
“there are some days when everyday responsibilities and annoyances of diabetes are overwhelming. it’s there all the time,” admits peggy hawthorne, karen’s mom, pictured here in the 1980s with her glucometer to measure blood sugar. “i accepted my diabetes and just learned to live with it.”
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screening for type 1 diabetes has advanced
screening involves a blood test that measures proteins called islet autoantibodies. those are markers that confirm your immune system is attacking and killing the insulin-producing cells that you depend on.
while the test can be done with a conventional blood sample vial, it’s now increasingly done by a capillary sample. “that means a finger poke,” she says, adding that the blood droplet provides a dried blood spot for examination. and in many cases, this can be done at home or, depending on your comfort level, it can also be done in the lab.
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trialnet, an international group of researchers, physicians and healthcare providers, will screen relatives of individuals who are living with type 1 diabetes for free with home test kits or tests at a lab.
the reason why screening is so important is that most people who are diagnosed with type 1 diabetes are diagnosed when they start to show symptoms of the disease. and many people are diagnosed when they are very sick.
“we have children who are admitted to the icu who have prolonged hospital stays, who are very unwell with a condition called diabetic ketoacidosis.” without enough insulin, your body begins to break down fat as fuel. this causes a buildup of acids in your blood called ketones. if it’s not treated, the buildup can lead to diabetic ketoacidosis. “not only is it life-threatening if it’s not treated quickly, but there are neurologic consequences. there are kidney disease consequences.”
mcassey also points out that many years of research confirm that type 1 diabetes has a clinically silent or pre-symptomatic period where people have type 1 diabetes, but they don’t know about it. screening can identify pre-symptomatic type 1 diabetes and prevent diabetic ketoacidosis and the requirement for hospital admission in general and emergency care. as well, children who are diagnosed early tend to have better long-term metabolic control, so less damage as the years go by.
mcassey also points out that many years of research confirm that type 1 diabetes has a clinically silent or pre-symptomatic period where people have type 1 diabetes, but they don’t know about it. screening can identify pre-symptomatic type 1 diabetes and prevent diabetic ketoacidosis and the requirement for hospital admission in general and emergency care. as well, children who are diagnosed early tend to have better long-term metabolic control, so less damage as the years go by.
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“once the symptoms have developed, you’re well along the course of the immune destruction of the (insulin-producing) beta cell. so when we screen and identify kids and individuals early, they have more of those insulin-producing cells in their body that haven’t yet been destroyed. there’s greater potential to delay the currently inevitable decline. so if we screen and identify early, we can change the course of their diabetes.”
another key point is that screening offers people the opportunity to participate in clinical trials designed to delay and ultimately prevent the onset of diabetes.
“we’re so fortunate to have people participate in clinical trials because that’s really the only way that we’re going to find that cure and know how to prevent diabetes.”
understanding the psychological and biological impacts of diabetes
the psychological impact of the disease and the shock to families who spend time in the icu with their loved one who is very, very sick are always a significant part of diabetes care to make the transition to life-long insulin use and diabetes management. mcassey has long had a soft spot for kids and adolescents living with type 1 diabetes, and it began during her medical residency, when she spent a stay at a diabetes camp where she met kids who were “incredibly resilient,” she recalls.
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“it was such an experience for me to live with people who are living with diabetes and really understand the impact of diabetes on the lives of children and their families. i was just drawn to that area of medicine subsequently. the humility that was gained to understand what it was like to walk in the shoes of someone who is there for an individual with diabetes, the relentless, demanding requirements of managing a condition that is 24/7. people think of insulin as a cure and insulin is not a cure. there’s so many impacts that diabetes has on your day-to-day life.”
at diabetes camp, kids are often much more active and have to be aware of insulin and food for blood sugar control. mcassey also mentions the changes happening at puberty.
“there are hormones, the sex steroids, growth hormone, that counteract how insulin is working. so your insulin requirements tend to be the highest at the time of puberty.” social shifts, fluctuating schedules for school, part-time jobs and sleep also have an effect.
“those lifestyle factors that are much more variable also can contribute to challenges in managing diabetes and resistance that’s happening physiologically, just compounds that challenge.”
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again, she circles back to screening because early detection can be empowering and lessen the psychological impact. evidence from studies shows that the parents of children who are diagnosed with pre-symptomatic diabetes have less anxiety and depression. people have more time to prepare for needing insulin. they can learn more about diabetes, continuous glucose monitoring and insulin pumps, and different ways of managing diabetes, as well as meeting others with diabetes to hear their stories.
“so education is such a key part of screening and then providing reassurance and follow-up and making sure that we are minimizing the burden of knowing early and the anxiety that can happen. having a diabetes team is huge. that person living with diabetes is captain of that team.”
my mom has been very open about her own health journey and the need to help others. in the past, she’s talked to parents of kids to give them hope and reassurance.
but the reality is that type 1 diabetes has to be a lifelong focus.
“there are some days when everyday responsibilities and annoyances of diabetes are overwhelming. it’s there all the time,” she admits. “i accepted my diabetes and just learned to live with it.”
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