Wednesday , April 21 2021

Diabetes type 1: the daily struggles of dealing with invisible and incurable disease

November is National Diabetes Month, but for the more than one million American children and adults living with Type 1 diabetes, every day and night is a constant reminder of a physically and emotionally tedious disorder that requires constant monitoring.

"I use an insulin pump, a continuous glucose monitor, I make several lipsticks a day, I count carbohydrates," said Bridget Kelly, a mother of two who was diagnosed in her 20s and 40s. "Type 1 diabetes is like a second job that you can not give up."

People with type 1 diabetes should work to keep their blood sugar level within a normal range. High sugar in the blood over a long period of time can lead to devastating complications.

In the short term, blood sugars that are too high or too low can be deadly.

Kerri Sparling, of the blog, is also the mother of two children and was diagnosed in second grade. No one else in your family has type 1 diabetes, and she remembers her parents being very upset about the diagnosis.

They tried to explain a chronic illness to her, to which she said, "So, I'll have until Christmas?"

Her parents gently replied, "No, dear – every Christmas."

Type 1 diabetes can target people of any age and in any condition. Once called "juvenile diabetes," we now know that people can be diagnosed as children or adults.

Symptoms usually include extreme thirst, frequent urination and sudden weight loss, leading to a medical consultation during which a person receives a blood test – the only way to identify type 1 diabetes. For those at risk, blood sugar is dangerously high.

Type 1 diabetes is an autoimmune condition in which a person's immune system attacks the insulin-producing cells of the pancreas and can no longer produce insulin. Insulin is essential for life because it provides glucose, also known as blood sugar, that all the cells in the body need to function.

There may be immediate relief after diagnosis, knowing there is a name for what is happening and that there are monitoring systems – and that insulin will be available for daily treatment. But for a person with type 1 diabetes, life is never the same.

"After my diagnosis, I was ready to do whatever it takes to take care of this disorder, but it's unimaginable how much work it takes to keep blood sugar within a safe range when the pancreas stops making insulin." Kelly said.

This is different from type 2 diabetes, most commonly seen in adults with obesity, high blood pressure and high cholesterol. It is believed that both types have a genetic component, and both are linked to the pancreas.

PHOTO: A CDC chart talks about type 2 diabetes.CDC
A CDC chart talks about type 2 diabetes.

In type 2 diabetes, however, the pancreas still produces some insulin and can be controlled with oral medication, exercise and diet.

Currently, there is no way to prevent type 1 diabetes, usually called DM1, and there is no cure.

The ABC News Medical Unit previously reported the technology now available to make it easier to manage diabetes and solutions on the horizon.

For now, it is a very difficult disorder to manage, surrounded by the questioning of the individual and the well-intentioned people around them who can offer dietary counseling without understanding type 1 diabetes.

"I choose when I eat my carbohydrates carefully," Kelly said. "So if I want to eat pizza or chocolate cake, I can … but I need to know how many carbs there are in that food and take the insulin needed through my pump, so my blood sugar does not fire. insulin or my blood sugar will plummet and I can go into a coma and worse. "

"I'm also considering variables like whether I'm going to exercise soon or sleep right away and what my blood sugar level is," Kelly added. "I have to think about all of these things before eating and making insulin dosage decisions, so it's not helpful if other people are commenting on my meal choices."

New everyday life

Every day a person with DMT1 needs to make many decisions: they need to check their blood sugar levels regularly with a finger test, especially before eating; they inject themselves with insulin, since there are no pills available to treat DMT1, or they use an insulin pump device; and actively think about what they are eating – how much carbohydrate each meal or snack contains.

PHOTO: Risa Pulver shares what she holds in her bag to manage her Type I diabetes. risapulver / Twitter
Risa Pulver shares what she keeps in her purse to manage her Type I diabetes.

If they are ill, more active than normal, gained or lost weight, they need to adjust their insulin doses; these variables are difficult to manage.

And finally, they need to be alert to dangerous signs that their blood sugar is too low or too high. They can start learning how to take care of their own body better than any health professional.

And they need to do this every hour, every day, every year. Do not give up or put diabetes on hold.

PHOTO: A woman on Twitter shares what she holds in her purse to manage her type I diabetes. leelee1789 / Twitter
A woman on Twitter shares what she holds in her purse to manage her Type I diabetes.

Carl Armato, CEO of Novant Health recently published "A Future with Hope". He was diagnosed with DMT1 as a child. In the book, he shares important lessons about his 50 years of experience.

PHOTO: A mother shows what is inside of her daughters in the swimming bag to pass through the practice.FloridaMom / Twitter
A mother shows what is inside the daughter's swimming bag to pass through the practice.

"Illness is disease, but it's how people deal with diabetes and adapt to it, which is critical to the quality of life they have – more importantly, to know if they have life to live," he said.

He admits that it is difficult to administer, but advises, based on his experience, that it is more than possible to have a successful and satisfying life.

"Diabetes is a marathon, not a race," said Armato. "Things happen, you lose, you fail, then you have to stand up and fight."

Kelly, a mother of two diagnosed in her 20s, works with her endocrinologist, certified diabetes educator, and sometimes a specialist nutritionist.

She looks to deal with clutter as "going into battle".

"I always have my diabetes devices with me.I always need to think:" If I have a hypoglycaemia, how can I get sugar from fast acting to increase it? ", She said. "I keep Gatorade next to my bed and glucose tablets in my bag" to help regulate blood sugar.

PHOTO: ABC journalist Katie Kindelan shows what she's been doing a week away from home and her daily supplies to manage her diabetes. Katie Kindelan / ABC News
ABC journalist Katie Kindelan shows what she takes to a week away from home and her daily supplies to manage her diabetes.

A day in life

Doctors treating people with DMT1 are endocrinologists. They can prescribe insulin and talk to a person with diabetes about their health, and check blood tests that measure the average level of blood sugar in the last three months to see how they are controlling blood sugar.

Kelly said: "For me, the online diabetes community has been very important. Emotionally and practically, it helps a lot to share information and experiences with others with type 1 diabetes."

"That's a lot to deal with, and most people in my life have very little understanding of what I'm really doing to take care of myself," he added. "Well-meaning people want to suggest alternative treatments involving cinnamon or a special herb, and I have to say," Thank you, but I'll always need insulin. "

"It's good to connect with other people who really understand," she added, referring to people with diabetes.

One of the first people to share experiences online was Kerri Sparling, who said that when she started blogging, she was one of four or five T1 bloggers she knew.

Today, she speaks regularly on panels at diabetes conferences.

"I started the Six Until Me in May 2005 because I was tired of researching" diabetes "and figured little more than a list of complications and scary stories," she said. "Where were all the people who lived with this disease, as I have since I was a girl? I was the only person with diabetes out there who felt alone?"

She shares her daily experiences online in a very transparent way under titles like "Love Poem for My Stupid Pancreas," "Okayest Diabetic of the World," and "Um, can you eat this? A Halloween Poem."

PHOTO: An undated image of a person checking their blood sugar level. STOCK / Getty Images
An undated stock image of a person checking their blood sugar level.

She wrote a book called "Balancing Diabetes," but points out that she is not a doctor and joked, "I can not even drive a stick."

But his openness to his experience is invaluable to a large community of people living with Type 1 diabetes, who meet online in Facebook groups, conferences, and monthly meetings in their own community to avoid isolation.

"For most of my life, I was the only diabetic I ever met," Sparling said. "Fortunately, this is no longer the case."

"When you are diagnosed as young, all life events include diabetes," she continued. "I went to the diabetes ball, I had my diabetes license, I did my high school with diabetes, I had a special pocket sewn on my wedding dress for my insulin pump."

In your day-to-day life, you think of diabetes every few minutes. From the moment she opens her eyes in the morning to close her eyes at night, there are hundreds of little decisions she needs to make to stay safe.

There is a "variable for everything you do – how to dress, how far you go," she said. "Everything becomes automatic after a few decades."

If people with type 1 diabetes do not use newer technologies, such as an insulin pump or a continuous glucose monitor, they may need to inject with insulin four to eight times a day and check for sticks at least six to eight times a day .

Sometimes they need to check more. They should always be aware of how their body feels when their blood sugar level is too high or too low. If it is too loud, some people describe feeling anxious, with stomach ache, very thirsty or not. If it is too low, which can be very dangerous, they may experience headache, tremors, heart palpitations, confusion, slurred speech or even failure to respond.

PHOTO: A CDC chart talks about type 1 diabetes.CDC
A CDC chart talks about type 1 diabetes.

"We tiptoe up all the time, between I'm sick and I'm fine," she said.

But she does not let that stop her from living her life.

"You can do everything everyone can do except make insulin," Sparling said.

Speaking of insulin, diabetes is one of the more expensive chronic conditions – insulin prices have tripled in the last 15 years.

From 2001 to 2015, the price of Novolog, a commonly used insulin, went from $ 100 per vial to $ 336 per vial in the United States. People are known to ration their insulin, which can be fatal for someone with DM1.

There are generic versions, or alternative types of insulin, as well as patient care programs that can help lower the cost of insulin. The Endocrine Society and other patient and medical advocacy groups are urging the government to take initiatives on insulin accessibility.

Meanwhile, diabetes is your best advocate.

And these things I read online about pumps and sensors, and the? Artificial pancreas? Is that a cure?

Technology in diabetes is evolving at the fastest pace in history and working to improve the lives of people with DM1. There are insulin pumps that can automatically lower the amount of insulin you get if your blood sugar numbers are too low or if they are going down.

There are continuous glucose monitors, or CGMs, that detect your blood sugar levels every five minutes without needing a finger prick.

And now, there are systems where CGM can communicate with the insulin pump in a "closed circuit hybrid system". At Boston University and several new companies across the country, there are ongoing research to build a "closed loop" system, or artificial pancreas, that does not require any human input.

We are so close and so far. Even the most advanced systems on the market now still require human input. If the blood sugar level is too low or too high, the sensors or pumps will beep and request a confirmatory finger test. People still need to enter the amount of food they will eat or make adjustments if they want to exercise or not eat for a long period of time.

Machines may experience technical errors or malfunctions; the tubing may be painful or clogged, the sensor or pump may fall or the battery may run out.

You can not turn your brain off, no matter how good the technology is.

Sparling, the blogger, said she has "hope for a cure," but "I have to live today."

There are many famous and successful athletes and practitioners with DM1 who never let their illness define their careers. Mountaineer Will Cross has climbed Mount Everest, professional soccer player Mark Andrews and Supreme Court Justice Sonia Sotomayor, to name a few, continue to realize their dreams while living with DM1.

My beloved was diagnosed with DM1. What can I do to help you?

"What anyone with diabetes soon learns is that you can not do it yourself," said Armato, CEO of Novant Health. "A good system of constant support … is like the breath of life."

Here are some important tips for family and friends of people with DM1:

– Understand that this is a disease that requires almost 24/7 attention. Have empathy. Be positive, not critical and critical.

– Learn about T1DM from trusted sources rather than transmitting the things you've heard.

– Recognize the signs and symptoms of low blood sugar.

– Know where your loved one keeps his glucose meter, insulin supplies and glucose guides.

– Know the phone number of your loved one's doctors.

"You can do your best," Sparling said, "and things can still happen."

Online Resources

There are some good and reliable online resources and meetings for people with DM1 and their family and friends.

Armato and Sparling emphasized the importance of having support.

"Find your support community, someone who can say" me too "and be there for you – it's very powerful – someone who will not judge you and will hold you when you're down," said Sparling .

Here are some reliable organizations for people living with Type 1 diabetes:

– American Diabetes Association

– JDRF (Juvenile Diabetes Research Foundation)

– College Diabetes Network

– SixUntilMe

– BeyondType1


– children with diabetes

Dr. Tiffany Yeh is currently a member of endocrinology at Weill Cornell Presbyterian Medical Center in New York and a member of the ABC News Medical Unit. Eric M. Strauss is editor-in-chief of the ABC News Medical Unit and married to Bridget Kelly. He thanks your comments on Twitter: @ericmstrauss

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