Stacey Moragiannis was diagnosed with Type 1 diabetes in 1978, when she was only six. Now an Omnipod device, a tubeless, wearable insulin pump used to manage diabetes has given Stacey a newfound freedom in diabetes management.
The initial news of the diagnosis when she was a child came as a shock to her parents who migrated to Australia in the early 1960s.
The diagnosis of an incurable disease, one that they had no information on other than the fact that she had to take insulin for the rest of her life, was devastating.
The constant monitoring of blood sugar levels, the need for regular insulin injections, or infusion, and the risk of hypoglycemia or hyperglycemia, were a constant source of stress and anxiety. Especially for her father who made it his life mission to control her disease.
“There can be a lot of stigma around Type 1 diabetes, which makes it more difficult for people living with the condition to manage it. I spent four decades of my life with diabetes at the forefront of every decision. I want to share my story to let people know that especially now, they can enjoy every aspect of life,” Stacey Moragiannis tells Neos Kosmos.
A common misconception is that Type 1 diabetes is caused by poor diet, or lifestyle choices. It is not.
It is an autoimmune condition that is not preventable, or curable. It can affect people of all ages and backgrounds. The misconception leads to feelings of shame or guilt among people with Type 1 diabetes, which makes it harder for them to seek the medical care and support.
For many with diabetes, including Stacey, the Omnipod device provides freedom in diabetes management. It offers a discreet and comfortable approach to insulin delivery. With this new technology users are no longer tethered to their insulin delivery devices.
They can move, exercise, and live their lives without worrying about the visible signs of their diabetes management. Moragiannis who works as an executive in a corporate environment stresses that it is important to understand that people with Type 1 diabetes are managing a complex medical condition that requires careful monitoring. Rather than stigmatising them, she says, we should support them and work to educate others about living with Type 1 diabetes. This will ensure the disease is picked up in the early stages by parents or close environment.
A STATE OF CONSTANT ANGUISH
“I went from being normal to feeling tired and falling asleep on the couch as a child constantly, when others would play. I was always thirsty and started wetting my bed. My mother knew something was wrong, because my behaviour would not make sense.””Back then such changes could be related to a mental health issue, which can lead to further isolation,” she says.
“They sent me to the hospital and that’s where I still remember being on the table in the room.
They put me on a bed, all the lights beaming down at me. My blood sugars were sitting at 13.9 when a normal person’s blood sugar is between 4 and 6. Next minute they’re injecting insulin into my body. Mum and dad didn’t understand a word of English. And my sister, 15 at the time, was the translator. My parents could not believe it. Especially my dad. His entire world fell apart. I saw him age in days…,” Stacey says.
Her voice breaks, “He thought the doctors were lying to him, or that it was curable. Dad took full control of me. My father, he’s gone now, was strict, and overprotective, especially of me.”
Her father, not knowing what to do, banned all sugar in the house and took his daughter to Sydney in search for a non-existent cure. English not his first language, and with limited information , Stacey’s father was on a mission to find out everything he could about diabetes. Her older sister attended medical appointments and learned how to inject insulin when the parents were not around.
“I would wee in a bottle and my father would measure my blood sugars with a strip back in the 1970s. He would give me my injections every day with, you know, a glass vial of insulin with a really thick syringe,” she tells Neos Kosmos.
“I used to run around the house crying because I didn’t want to have my injection and I could see the anguish in his face. The results could be quite fatal. He monitored everything I ate.”
THE STIGMA
At the same time, comments and “weird looks” between relatives and acquaintances forced her to keep her condition secret all through primary school. It got harder to keep it under wraps in high school, which resulted in her suffering bullying.
The trauma made her hide her condition form her friends in her twenties and she even travelled to Greece for a holiday without letting anyone know. As the years went on she stopped caring about people’s reactions. Even though it seems that “everyone has an opinion about what I did wrong to get it and what I can and can’t eat 90 per cent of the time”.
“People around me like to ask lots of triggering questions, in a judgemental tone. They look at my lunch or dinner or snacks and almost immediately go off. ‘Are you allowed to eat that? Are you sure you can eat dessert? Why are you eating cake? Should you be drinking juice? Oh my God! Is this alcohol? There’s a lot of stigma around it,” she adds.
“I can’t help but get defensive sometimes but most of the time I try to educate people and explain that we can eat whatever we want, all in good measure and that we manage our carb intake and sugars with insulin.”
Another issue is that people with Type 1 diabetes may be judged or misunderstood for needing to manage their condition in public. Someone who needs to test their blood sugar or inject insulin may feel self-conscious, or anxious about doing so in front of others. This leads to social isolation and discrimination.
“I have been asked to remove myself from a public space, or a room with other people and go find a bathroom or a “corner” to inject myself in private. There’s also this idea that you’re going to die because you can fall into a coma if you have a hyper, which is your blood sugar rising, or if you have a hypo, when your blood sugar drops,” Moragiannis says.
“In the office people don’t understand when I’m having a hypo, during which I can can experience brain fog, shaking, dizziness and sweating. I ask them to give me five minutes to rebalance, literally all it takes, but some people ignore my state and continue to talking to me, or even at me.”
A NEW LEASE OF LIFE
“Every time I hear a little child has been diagnosed, my heart breaks knowing what they and their family with have to go through,” she says.
” I just want the parents and the kids out there to know that I’m 50, turning 51 and I’m living and thriving like never before with Type 1 diabetes. Anyone can do it as long as you manage it correctly.”
Stacey argues that it’s well past time for Australians to put an end to the stigma by getting educated and being a part of the solution, not the problem.
“My father was intense, but taught me discipline. I learn the importance of having a choice and taking full responsibility for it. I have attained great awareness of my words and actions the same way I have become conscious of what I consume,” she explains.
“By educating myself and having a structured life with healthy habits I have gained more freedom and even when I was injecting myself several times a day I was as healthy as a person that had never heard of diabetes.”
Even though the control felt overwhelming at first, her father taught her that she was training herself to live an even better life.
“He told me that I could do anything. That no matter what, I could and should life my life and not refrain from activities and experiences because of diabetes. He actually pushed me towards sports and being more active, something I am now very grateful for.”
The Omnipod system, is a wearable insulin pump that allows people with diabetes to adjust their basal and bolus insulin doses according to their specific needs.
“I wish my dad could see me now. He would be so happy. It’s a game changer. It manages my slow release insulin and I can also tell the device what I am about to eat in order to release more fast acting insulin and manage my blood sugar levels without me worrying about carrying injections and constantly measuring myself. I haven’t yet travelled overseas with it but I can’t wait,” Moragiannis tells Neos Kosmos.
The discreet and comfortable approach to customizable insulin delivery options, has given people with diabetes the ability to move and live their lives with greater ease and confidence.
“If you are living with diabetes and are considering an insulin pump, the Omnipod device may be a great option for you,” Stacey says.
“Talk to your healthcare provider to learn more about the benefits and to determine if it is the right choice for you.”