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Type 1 diabetes: The daily struggle to deal with the invisible, incurable disease

November is a national diabetes month, but for the more than one million children and adults in the United States…

November is a national diabetes month, but for the more than one million children and adults in the United States living with type 1 diabetes every day and night is a constant reminder of a physically and emotionally boring illness that requires constant monitoring.

“I have an insulin pump, a continuous glucose monitor, makes several fingertips a day, counts carbohydrates,” said Bridget Kelly, a mother of two diagnosed in the 20’s and now in the 40’s. “Type 1 diabetes is like a second job that you can not stop.”

People with type 1 diabetes must work to keep their blood sugar in a normal range. High blood sugar over a long time can lead to devastating complications.

In the short term, blood sugar that is too high or too low may be fatal.

Kerri Sparling, from the blog SixUntilMe.com, is also a mother to two and diagnosed in second class. No one in her family has type 1

They tried to explain a chronic illness to her, as she said, “I’ll have it for Christmas?”

Her parents answered carefully: “No, honey-all the Christians.”

Type 1 diabetes can meet people of all ages and in all states. Once called “juvenile diabetes” we know that people can be diagnosed as children or adults.

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

Type 1 diabetes is an autoimmune condition where a person’s immune system attacks the insulin-producing cells in the pancreas and can no longer make insulin. Insulin is essential to life because it delivers glucose, even blood sugar, which all the cells in the body need to function.

There may be immediate relief after diagnosis, knowing that there is a name for what is happening and that there are monitoring systems – and the insulin that 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 what was necessary to take care of this disease, but it is unthinkable how much work is required to keep your blood sugar in a safe area when your pancreas stops making its own insulin , Says Kelly.

This differs from the more common type 2 diabetes most commonly seen in adults with obesity, high blood pressure and high cholesterol. Both types are believed to have a genetic component, and both are linked to the pancreas.

However, in type 2 diabetes, the pancreas still makes some insulin and it can be controlled by oral medication, exercise and diet.

There is currently no way to prevent type 1 diabetes, commonly called T1DM, and there is no cure.

The ABC News & Medical Unit has previously reported on the technology available to make the management of diabetes easier and the solutions on the horizon.

At present, it is a very difficult disease to deal with, surrounded by another guess of the individual and the well-meaning people around those who can offer dietary advice without understanding type 1 diabetes.

“I choose when I eat my carbohydrates carefully,” said Kelly. “So if I want a pizza or chocolate cake I can …. but I need to know how many carbohydrates are in that food and take the necessary insulin through my pump so my blood sugar does not slip. And I can not take too much Insulin or my blood sugar will shrink and I can go into coma and worse. “

“I also consider variables as if I’m going to work soon or sleep soon and what my current blood sugar is,” added Kelly. “I have to think about all these things before I eat and make decisions about insulin dosage. So it’s not helpful if other people comment on my meal choices.”

Every day, a person with T1DM has to make many decisions: They must check their blood sugar levels with a finger test regularly, especially before eating; inject with insulin, as no pills are available for the treatment of T1DM, or use an insulin pump device; and think actively about what they eat – how many carbohydrates contain each meal or snack.

If they are sick, more active than usual, gained or lost weight, they must adjust the insulin doses. These variables are difficult to handle.

And finally, they must ensure that dangerous signs of blood sugar are too low or too high. They can start learning to take care of their own body better than any healthcare professional can.

And they need to do it every hour, every day, every year. You can not stop or put on diabetes.

Carl Armato, CEO of Novant Health, recently published “A Future of Hope”. He was diagnosed with T1DM as a toddler. In the book, he shares important lessons about his 50 years of experience.

He admits that it is difficult to handle, but states from his experience that it is more than possible to have a successful and fulfilling life.

“Diabetes is a marathon, not a sprint,” said Armato. “Things happen. You lose. You fail. Then you have to come back and fight.”

Kelly, the mother of two diagnosed in the 20’s, works with her endocrinologist, certified nurse educator and, sometimes, a specialized nutritionist.

She is looking at dealing with the disease as “entering conflict”.

“I always have my diabetes products with me. I always need to think,” If I have hypoglycaemia, how should I get fast-acting sugar to raise it? “She said.” I’m keeping Gatorade at my bed and glucose tablet in my purse “to help regular blood sugar.

Doctors who treat people with T1DM are endocrinologists. They can prescribe insulin and talk to a person with diabetes about their health and check blood tests that measure their average blood glucose levels over the last three months to see how well they control their blood sugar.

Kelly said: “For me, the diabetes website has been so important. Emotionally and practically, it helps so much to share information and experiences with other people with type 1 diabetes.”

“This is a lot to handle, and most of my life has very little understanding of what I really do to take care of myself,” she added. “Well-meaning people want to suggest alternative treatments with cinnamon or a special herb, and I have to say thank you, but I always need insulin.

“It’s good to connect to other PWDs who really get it,” she added, referring to people with diabetes.

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

Today, she regularly speaks of panels at diabetic conferences.

“I started Six Until Me in May 2005 because I was tired of Googling” diabetes “and came up with a little more than a list of complications and scary stories,” she said. “Where were all the people living with this disease, which I have been since I was a little girl? Was I the only person with diabetes out there who felt alone?”

She shares her daily experiences online in a very open way under titles like “Love Poem for My Stupid Pancreas”, “World’s Okayest Diabetic” and “Um, Can You Eat It? A Halloween Poem.”

She has written a book called “Balancing Diabetes” but points out that she is not a medical professional and joked: “I can not even drive a stick.”

But her openness about her experience is invaluable for a large group of people living with type 1 diabetes who collect in Facebook groups online, at conferences and monthly meetings in their own community to avoid isolation.

“Too much of my life, I was the only diabetic I knew,” said Sparling. “Thank you, it’s not that anymore.”

“When you are diagnosed so young, every life event has included diabetes,” she continued. “I went to diabetes with diabetes. I got my license with diabetes. I graduated from high school with diabetes.” I had a special pocket soured in my wedding dress for my insulin pump. “

In her daily life, she thinks about diabetes every few minutes. From the moment she opens her eyes in the morning until she closes her eyes at night, there are hundreds of small decisions she needs to make to stay safe.

There is a “variable for everything you do – how to dress how far is the device,” she said. “Everything will be automatically after a few decades.”

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

Sometimes they need to check more. They must always be aware of how their body feels when blood sugar levels are too high or too low. If it is too high, some people describe that they are worried, a stomach ulcer, very thirsty or not themselves. If it is too low, which can be very dangerous, they may feel headache, tremor, palpitations, confused, dizzying speech or even respond.

“We’re tipping that line all the time between my illness and me” I’m fine, she said.

But that does not allow her to prevent her from living her life.

“You can do all that anyone else can do, besides making insulin,” Sparling said.

With insulin, diabetes is one of the most expensive chronic states – insulin prices have tripled over the past 15 years.

From 2001 to 2015, the price of Novolog, a regular insulin, ranged from $ 100 per vial to $ 336 per vial in the United States. People have been known to ransack their insulin, which may be fatal to anyone with T1DM.

There are generic versions or alternative types of insulin as well as patient care programs that can help reduce the cost of insulin. Endocrine Society and other doctors and patient advocacy groups call on the government to initiate transparency initiatives.

Meanwhile, diabetes is their own best advocate.

The technology of diabetes develops at the fastest pace in history and works to improve the lives of people with T1DM. There are insulin pumps that automatically reduce the amount of insulin you receive if your blood sugar is too low or low.

There are continuous glucose monitors, or CGM, which sense your blood sugar levels every 5 minutes without having a finger stick.

And now there is a system where CGM can communicate with the insulin pump in a hybrid closed loop system. At Boston University and various start-ups across the country, there is ongoing research to build a closed loop system or artificial pancreas, which does not require any human input.

We are so close, but still so far. Even the most advanced systems on the market still require human input. If the blood sugar is too low or too high, the sensors or pumps peep and request a confirming fingerprint. People still need to enter the amount of food they should eat, or make adjustments if they are going to work out or not to eat for a long time.

Machinery may, however, result in technical faults or malfunctions. The pipe can be kinked or clogged, the sensor or pump may fall or the battery may end.

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

Sparling, the blog, said she has “hope for cures” but “I have to live today.”

There are many well-known and successful athletes and professionals with T1DM who never let their illness define their careers. Mountain Climber Will Cross Climb Mount Everest, Professional Football Player Mark Andrews and Supreme Court Justice Sonia Sotomayor, to name a few, continue to achieve their dreams while living with T1DM.

“What someone with diabetes now learns is that you can not do it alone,” says Armato, CEO of Novant Health. “A good stable support system … is like the breath of life.”

Here are some important tips for family and friends for people with T1DM:

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

– Learn about T1DM from trusted sources instead of transmitting things you’ve heard.

– Recognize signs and symptoms of low blood sugar.

– Know where your love holds glucolets, insulin delivery and glucose tabs.

– Know the phone number of your beloved doctor.

“You can do the best,” Sparling said, “and things can still happen.”

There are some good, reliable online resources and meetings for people with T1DM 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 stay you down,” said Sparling.

Here are some trusted organizations for which they live with Type 1 diabetes:

– American Diabetes Association

– JDRF (Juvenile Diabetes Research Foundation)

– College Diabetes Network

– SexUntilMe

– BeyondType1

– DiaTribe

– Child with diabetes

Dr. Tiffany Yeh is currently an endocrinologist at New York Presbyterian Weill Cornell Medical Center and a member of the ABC News Medical Unit. Eric M. Strauss is executive editor of ABC News Medical Unit and married Bridget Kelly. He welcomes your comments on Twitter: @ericmstrauss

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