Month: February 2024

My parents were one of the original families that brought JDRF to Canada. I was 13 years old in 1971 when my brother David was diagnosed with type 1 diabetes (T1D), and I was diagnosed at 15 years of age. My parents felt there wasn’t enough going on at the time regarding T1D research. It was hard to even get information on what T1D even was – it was called the ‘sugar disease’ in the encyclopedia. When my brother David was diagnosed he went to the hospital, I thought he was going to die. He became a functioning diabetic and the whole family got behind him. So, when I was diagnosed, mine was caught very early. I was able to diagnose myself on his urine test strip. I went to the hospital and was formally diagnosed and went on injection (insulin) immediately.

My parents made it so that we had to figure out how to manage our diabetes day-to-day and live our lives. We played sports, hockey, soccer etc. It was never an issue that we wouldn’t be as active as possible, while still being very aware of our own bodies and our diabetes management.

While this was going on, our parents were working behind the scenes to raise money and awareness for T1D cures.

I know that they never believed that 50 years later, we would still be struggling to find a cure. The management has improved, the technology has improved, but we are still looking for the cure.

Gerald Josephson and Mitch Garfinkle met with JDRF volunteers in NYC, and then brought JDRF to Montreal, in 1974, then the Shiff family and the Oelbaums in Toronto a few years later. These initial families, including mine – were all about the cure. Whatever money was raised would go to research labs to help find the cure. Every decade since, there has been a lot of hope, a lot of progress, but still not a cure. Still, I believe still that there will be a cure for diabetes. I know there will be.

Can you share what T1D management was like 50 years ago?

I’ve seen everything since the early 1970s: MDI (multiple daily injections), slow acting, fast acting (insulins), we were weighing food at the restaurants as kids. We got rid of Frosted Flakes and ate Special K, and this was a complete contribution as a family. We all changed our diets and eating habits. There was little official guidance to follow. Being social as teenagers wasn’t the easiest, but my parents were insistent that we didn’t whine and complain but make it work, so we were open as a community. My friends all knew what we knew as diabetics, they knew how to help with lows (low blood glucose), there was always a glass of juice available.

I was patient #20 with a (insulin) pump when I was 21. I was the first outpatient of Dr. Elissa Schiffman from the Montreal Children’s Hospital. The size of the pump was thick and about the size of a tablet, I wore it under my shirt, but it was a continuous infusion. I would give myself boluses (short-acting insulin that you get at mealtimes) before eating. But it gave me the freedom to manage my lifestyle while managing my diabetes in a better way for myself. The pump gave me freedom to eat when I wanted, and this was a game changer for me. Not having to eat on a regimented schedule every day made a huge difference. It was a huge plus for me. I was monitored, but it essentially acted the same as a pump today, just bigger and with slightly less functionality.

I’ve been on a continuous glucose monitor, which is also a big change. This lets you know where you are (blood glucose levels) throughout the day. You know the direction your sugar levels are going, high or low. You still must be involved and watch them; you can’t stop paying attention. But the highs and lows are so much more manageable and (the CGM) allows you to live with more confidence and it makes management a lot easier.

My son was diagnosed at 9 years old, and he’s now 35 years old. My son being diagnosed was the most painful experience for me. Like my brother and me, he must live as normal a life as possible, we make it work as a family. I know where his gene came from, I have guilt because of what he has to deal with as someone with T1D. One thing I want people to understand is that it’s not only ‘diabetes’, it’s not only managing your blood glucose and insulin. It’s a serious, degenerative disease with risk of significant complications. But the hope is always there that it will be cured in my lifetime.

What innovation or research update has excited you the most as someone with T1D?

Being more able to follow what’s happening in research, you can go online and get up-to-date information on new approaches and management. But arguably, we are not that much further ahead. I went from urine sampling, to testing, to blood glucose testing, and you can adapt quicker. These are tweaks though; the disease is still the same just better managed with technology.

I’m a little bit frustrated that although the reality of where we are is better, I am impatient. I am hoping that the stem cell technology discovered in the 90s will make a much more significant impact. Today’s T1D research has a lot of things that are branched out into other areas, like mental health, and other fields, this is all great – but there are no changes that have helped me personally, in that I still have type 1 diabetes.

We must give people hope. A person with T1D today can live quite a normal life. With continuing technology and science, this will continue to make the life of a diabetic easier and more like that of other healthy individuals.

What would a cure look like to you?

No more testing, no need for insulin. I could live with that. I would like to wake up in the morning and not worry about where my glucose levels are, and not have to ask myself: do I need to eat, or not eat, or take more or less insulin.

To be able to eat a meal without calculating the carbs would be freedom. The day-to-day is not that hard for me anymore, but I worry about the long-term effects as I age. I don’t want to worry about longevity or long-term complications. I want to enjoy my life actively as I have. I do live every day like I don’t know what tomorrow will bring. We can only control today.

For most of us, living with T1D is not such a bad thing, we learn to manage the best we can but I feel sad when I hear of others who are diagnosed. So, if we can inoculate (against it as a form of prevention), that would be OK for me. I wouldn’t get a cure, but it would mean nobody else would ever have to live with T1D.

I’ve been very lucky. I have terrific support, my wife, kids, friends. I just wish they could be supporting me for other reasons other than T1D.

What has JDRF meant to you and your family?

In different areas, different emotions. The idea of a family of people within the JDRF organization working towards a common goal – a cure – is meaningful to me. It’s been very emotional. The people who I met when I was younger taught me that I had to become somewhat more responsible and mature as a teenager living with T1D. So having that support was terrific, and I want to do the same for others. I’m not looking for a thank you of any kind, just the ability to help others that find themselves with diabetes and are looking for a cure.

I really, truly just want a normal life. So that I don’t have to deal with diabetes. That is my hope for the future. If it’s an implant, or injection, whatever it is – I’ll take it and I go back to how I was before diabetes. Realistically, I don’t know what the future holds for me, but hoping is good. Hope is powerful. We will continue our fight to find a cure!

JDRF Canada is so grateful to Jimmy Garfinkle for his most recent contribution, matching donations for our Spring Flash Campaign in March, up to $50,000 to support T1D research.

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An often under looked aspect of living with a chronic condition like type 1 diabetes (T1D) is the stigma that can accompany it. Generally, diabetes stigma can be defined as negative perceptions, judgment, discrimination, or a prejudice against someone because of their diabetes. The majority of T1D stigma derives from a lack of understanding of the disease itself, and a belief that lifestyle factors such as diet or lack of exercise – or eating too much sugar ‘caused it’.  

T1D is an autoimmune disease that cannot be prevented, but there remains a belief among many that simply changing habits can reverse or ‘cure’ T1D. And it can be exhausting for someone with T1D to have to repeatedly explain the mechanisms of their condition or experience undue attention on their diet, exercise habits and overall health and lifestyle.

Over the long-term, diabetes stigma and discrimination can affect T1D management and self-esteem, to the point that it may lead to hiding visible cues of their condition, such as covering up diabetes devices like advanced glucose monitors, or pumps, performing less frequent checking of blood glucose levels, or injecting insulin in private to avoid being seen as having a chronic disease. It may even cause someone to avoid seeking healthcare when needed, which could lead to potential diabetes-related complications.
Experiencing this type of stigma can have implications both internally and externally. Absorbing the negative perceptions that come from diabetes stigma can lead to feelings of shame, failure and guilt. This can impact familial relationships, the workplace, relationships with friends and mental health.

“Sometimes, being open about my T1D can be challenging because I never know what preconceptions or assumptions others may have. More than once, people have asked me, “Should you be eating that?” or “You must have been overweight before your diagnosis?” These negative experiences often create a barrier to disclosing my disease and make me hesitant to share my journey with T1D for fear of being ridiculed, ostracized or shut down. But I do my best not to internalize ignorant comments and instead try to use them to educate on what life with T1D is really like! “- Lauren (29-years-old, diagnosed age 11)

Many teens and young adults with type 1 diabetes have acknowledged experiencing diabetes stigma and that it resulted in them taking less good care of their health, according to a Research Institute of the McGill University Health Centre in Montreal study from 2019, which included 380 participants found via the social media channels of Diabetes Canada (which also supported the study), as well as diabetes clinics and organizations across the country.

During the study, (380 participants) between the ages of 14 and 24 completed an online survey that asked whether they told others they had diabetes, and whether they dealt with their diabetes care (or felt embarrassed about doing so) when with friends and other people.

Two-thirds had felt embarrassed about their diabetes and were more likely to have poor blood glucose control than the one-third who did not experience stigma. Over the previous year, this larger group was also more likely to have had either one or more events of dangerously low blood sugar that required help from another person, or an A1C level above 9% (A1C is a measure of average blood glucose levels over the last two or three months; the target for most people with diabetes is 7% or less.) The study, which was published in the Journal of Medical Internet Research, also found that feelings of stigma were slightly more common among females (68%) than males (59%).

“I found it hard at times to be open about living with T1D in work and school settings because of how many misconceptions are out there about this disease. Multiple teachers and coworkers often took an infantilizing approach after I shared my diagnosis with them, often telling me what I should and shouldn’t be eating and different ways I should be living my life according to their preconceived notions about T1D. Although these situations are hard to respond to, I try to take the opportunity to educate and not take these comments personally!” – Alicia (25-years-old, diagnosed age 7)

Unlike most chronic conditions, T1D is nearly completely self-managed. Diabetes distress, the feelings of frustration, guilt, shame and worry – (what some people with T1D experience when they’re overwhelmed by the relentlessness of diabetes) can be exacerbated by external diabetes stigma. And diabetes distress can lead to diabetes burnout, and a reluctance to manage the condition.

Diabetes stigma can particularly affect people who have diabetes and struggle with maintaining a weight that is comfortable for them. Blaming or shaming someone with diabetes, particularly by watching or commenting on what they eat, or how much activity they are doing, could lead to disordered eating or resistance to discussing changes in diet and blood glucose levels with healthcare providers.

 “Although doctors are the ones who should help you the most with your T1D, they can often be the ones inflicting blame and shame if they don’t like the numbers they’re seeing at your appointments or feel that your HbA1c/time in range should be lower. I struggled with that until I found a more supportive endocrinologist and started seeing a psychotherapist living with T1D. I’ve learned that the best way to combat these feelings is to be more self-compassionate and remind myself that no matter what my blood sugars are doing, as long as I am trying my best, it’s enough!” Lauren (29-years-old, diagnosed age 11)

Although I love being open about T1D and the challenges that come along with it, it is hard to be vulnerable sometimes as there is still so much misinformation and misconceptions out there about this disease. I have had multiple people react in shock when I share that I am diabetic as they say, “but you aren’t fat!” Responses like this perpetuate the wrong idea of what T1D is supposed to look like or what a person living with T1D should look like. Although comments like this can be hard to respond to, I do my best not to internalize them and always try to take an empathetic and educational approach in my response. I truly believe most people mean well, they just aren’t always knowledgeable about the nuances of T1D.” Alicia (25-years-old, diagnosed age 7)

How people think and talk about T1D, including healthcare providers, colleagues, loved ones and friends is essential to improving health outcomes for people with the condition, and to reducing the negative perceptions and judgement surrounding it. Having good support and people willing to listen and learn is key to reducing diabetes stigma and empowering people to feel open and comfortable sharing about what it’s like to live with T1D.

Finding a community of people also living with T1D can help. JDRF Canada offers connection and support through its volunteer and community engagement program. Learn more about community resources and volunteer opportunities that connect the T1D community.

Most importantly, there is never shame in having type 1 diabetes. You may need to be prepared to educate others or correct common misconceptions. But be proud of who you are and acknowledge to yourself daily that you are doing your best, and that is all that can be asked of you.

Additional Resources:
The End Diabetes Stigma: https://enddiabetesstigma.org/

 https://jdrf.ca/life-with-t1d/mental-health/free-mental-health-resources/

https://directory.jdrf.ca

People living with type 1 diabetes (T1D) are more likely to experience mental health challenges compared to those without diabetes. This includes disordered eating and eating disorders: those with T1D are 3-4 times more likely to experience these conditions.

Eating disorders include anorexia, bulimia, binge eating disorders, and insulin omission or restriction to lose weight, commonly referred to as “diabulimia.” Eating disorders are serious in any individual but are particularly dangerous to people living with T1D. In particular, insulin omission can induce hyperglycemia or diabetic ketoacidosis (DKA) (dangerously high blood glucose levels), which can be very dangerous, in some cases leading to severe diabetes related complications, coma, or death.

The close relationship and strict monitoring of food, such as carbohydrate counting, required as part of T1D management can cause stress that may increase the tendency to develop eating disorders in people with T1D. As well, existing treatments for eating disorders may not be ideally suited for people living with T1D, as there are many special considerations, such as the fact that starting or changing insulin treatment can result in weight gain. Accompanying this, there are often feelings of guilt and shame associated with living with a condition that requires careful self-management, and people living with T1D are further at a greater risk of experiencing depression, anxiety, and diabetes distress – a clinical condition that refers to the negative emotions that comes with the burden of diabetes self-management. Although nearly 1 in 5 children with T1D show signs of disordered eating, the signs are often missed.

On January 23, 2024, a Parliamentary Inquiry report in the United Kingdom on the risks of type 1 diabetes eating disorders (T1DE) was released, chaired by Global Health Ambassador The Right Honourable Theresa May MP and The Right Honourable Sir George Howarth MP, both who have a personal connection to T1D.

The parliamentary inquiry, funded with support from JDRF International, identified several systemic gaps and barriers that fail to provide effective support and care for people affected by T1DE (type 1 diabetes specific eating disorders). This includes gaps in diagnostic criteria and terminology for T1DE, the effect of stigma, limited research and evidence in this area, lack of knowledge and training of healthcare professionals, and lack of funding and access to mental health providers and eating disorder support services. There are clearly many areas that must be addressed to improve the experiences of people who are affected by T1DE.

A clear finding from the report is the need for integrated mental health support into diabetes care, with a recommendation to introduce mental health checks along with the existing physical health checks and screening during annual diabetes care appointments, and a need for mental health providers to have training on diabetes and T1DE. People living with T1DE often receive mixed messages and advice from different care providers with conflicting care plans. This latter finding suggests a need for greater communication, collaboration, and integration of different health services within health systems.

Sara, who lives with type 1 diabetes and T1DE, in the Parliamentary Inquiry report shared:

“I was diagnosed with type 1 diabetes at the age of three in 1990 and have had no psychological support in those 32 years. The expectation of how I was supposed to control my diabetes was so high from other people it was unachievable and unrealistic. I couldn’t reach perfect, so the only thing I felt I could achieve was being uncontrolled, so I developed an eating disorder and that became a coping mechanism. My first signs of T1DE were in year eight of secondary school, where I started omitting insulin, and things got worse after leaving pediatric care, as I struggled with bulimia as many as four times a day. I would hide how I felt but underneath my smile I hated myself, my body and the stress that my type 1 diabetes caused my loved ones. By omitting insulin, I could numb the relentless burnout that managing type 1 diabetes brought. I could also eat any food I wanted, and without taking insulin, I would lose instead of gain weight.”

As research is lacking in this area, JDRF International has identified T1D and eating disorders as a key priority and are currently funding three projects to support this. These projects will explore innovative interventions, testing the efficacy of an Acceptance and Commitment Therapy (ACT) intervention delivered via a mobile app, a guide for healthcare providers to see warning signs of eating disorders, and a virtual eating disorder prevention program. This research will support reducing gaps in evidence and interventions for people affected by T1DE.

What can we learn from this report?

• Greater investment in research in the area of T1D and disordered eating is needed to generate evidence-based best practices
• Evidence needs to be integrated into practice – this means training our health teams to recognize early signs of T1DE and explore prevention initiatives
• There is an opportunity for greater collaboration and communication among healthcare providers and care teams to improve patient care
• Funding in mental health is sorely needed to allow people living with T1D the ability to have improved access to mental health treatment
• Greater awareness of T1DE and the experience of stigma in diabetes and eating disorders must be addressed

What does this mean for Canadians with T1D?

Since JDRF Canada launched its mental health strategy in late 2021, we have been working to close gaps in mental health and T1D by creating the Mental Health + Diabetes Training Program to train mental health providers to have a greater understanding of diabetes, and recognize the need to further support eating disorders in this area. In late 2023, we co-hosted a webinar with the National Eating Disorder Information Centre (NEDIC) to introduce this important topic to healthcare professionals.

The Parliamentary Report recognizes the important role that peer support can play in treatment and recovery of T1DE, and “recommends the availability of in-person and online moderated peer support”. JDRF Canada is currently funding research in mental health and some studies are working to address the vulnerable years of transitioning from pediatric to adult care. These research projects are exploring peer support as a mechanism of reducing the feelings of isolation that often arise from living with a chronic condition, and to explore what impact that may have on mental health and diabetes related distress. As the risk of developing eating disorders is especially high during teenage years, it is vital that positive emotional and social support are made available during this time.

If you live with T1D, or have a loved one who does, and are struggling with disordered eating, or are restricting insulin to manage your weight, know that you are not alone, and reach out to your diabetes care team or someone else you trust. Help is available. Finding a mental health provider that is knowledgeable about diabetes can also help.

Supports and Resources

• To connect with a mental health provider, visit our Mental Health + Diabetes Directory
• For support with eating disorders, visit the National Eating Disorder Information Centre (NEDIC) or access their provider directory (English only).
• For Quebec residents, you can visit Anorexia and Bulimia Quebec (ANEB), access the Montreal based Douglas Institute Eating Disorders Program or BACA Eating Disorders Clinic
• For more information on mental health and diabetes, including eating disorders, learn more at JDRF Canada
• BETTER also has information related to T1D and eating disorders
• If you are a healthcare provider that wants to learn more about mental health and diabetes, including eating disorders, click here

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Hi, I’m Joanna! Born and raised in Ottawa, I now call Toronto my home. I’m passionate about health and fitness, PR/communications, all things food, travel and family!

When were you diagnosed with type 1 diabetes, and can you share a little about what that was like?

On March 16, 1998, I vividly remember looking down at my bruised arms where two IVs dripped into my veins to help bring my blood glucose levels back into a normal range. Nearby machines beeped relentlessly. Doctors and nurses gathered around. I had been rushed to the hospital ER from a family vacation, where I was immediately diagnosed with type 1 diabetes (T1D). I was also told we were lucky we came when we did. It was a moment that will be ingrained in my memory forever.

Over the next week, the hospital became my home—as well as my family’s—where we learned how to manage my newly diagnosed condition. Those early days laid the foundation for my journey with T1D, teaching me that while diabetes is a part of me, it doesn’t define me.

How has fitness impacted your daily management?

Being active and incorporating fitness into my life has been a game-changer for my overall T1D management. The routine of exercise—the planning, the commitment, the follow-through—it all strengthens my resolve to manage my T1D with intention. With every movement, I’m reinforcing habits that keep me on track: monitoring my blood levels, adjusting insulin, being mindful of my eating.

But it’s more than that. It’s about the mornings I wake up feeling unstoppable and the evenings I go to bed knowing I’ve done something good for myself. This positive feeling spills over into other areas of my life, making me a more focused, more present individual. In a way, managing T1D with the help of fitness is one of the best ways to take care of myself.

Can you share what has impacted your daily management the most?

Honestly, my daily management got a lot brighter when I started using a continuous glucose monitor. I can see what’s happening with my blood glucose levels in real time, and it means I can live my life with a lot less stress about my diabetes. I’m forever grateful for the advancements in diabetes technology—it’s come a long way since my diagnosis.

(Learn more about JDRF’s advocacy program to ensure universal access to diabetes devices like advanced glucose monitors here: https://www.jdrf.ca/advocacy/access-for-all/)

Why is supporting the T1D community so important to you?

There’s something profoundly human about being part of the T1D community. It’s a place of courage, resilience, and an unspoken understanding that we’re all in this together. Living with T1D can be isolating, as I quickly learned after my diagnosis. As soon as I found a support system, my life, and my outlook living with T1D completely changed. It’s a community of hearts and hands ready to catch you, lift you, and celebrate with you. That’s what being part of the T1D tribe is all about and I want to give back to this incredible community as much as I can.

Anything else you would like to share with the T1D community?

At the end of the day, T1D has been my greatest teacher in life. Living with this chronic condition for 26 years has taught me to listen to my body better than ever before, it’s encouraged me to be patient—especially on the tough days, and it’s proven that I’m strong and can conquer anything, even when people have doubted me. I’ve completed several triathlons and cycling races, have traveled solo overseas numerous times and have lived and worked abroad. Accomplishing these goals, and many more, has proven that nothing’s off limits.

My advice to those living with T1D: Your T1D has shaped your life, and, it has inevitably developed your resilience, sense of independence and confidence along the way. Don’t let it prevent you from living life on your terms. With the right attitude, you can conquer anything you put your mind to.

You can follow Joanna on her Instagram page here: https://www.instagram.com/joannamariefit/

Learn more about JDRF’s support services to connect the T1D community: https://www.jdrf.ca/support