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November is National Diabetes Month, but for more than a million children and adults living with type 1 diabetes in the United States, every day and night is a constant reminder of a physically and emotionally tedious disorder which requires constant monitoring.
"I carry an insulin pump, a continuous blood glucose meter, I stick several carbs a day and I count my carbs," said Bridget Kelly, a mother of two who was diagnosed at the age of 20 to 40 years. "Type 1 diabetes is like a second job that you can not stop."
People with type 1 diabetes should strive to keep their blood glucose levels within a normal range. High blood sugar over a long period of time can lead to devastating complications.
In the short term, too much or too little blood glucose can be deadly.
Kerri Sparling, from SixUntilMe.com, is also a mother of two and was diagnosed in the second grade. Nobody in her family has type 1 diabetes and she remembers that her parents were very upset about the diagnosis.
They tried to explain to her a chronic illness, to which she said, "So, I'm going to have it until Christmas ?!"
Her parents answered nicely, "No, darling – every Christmas."
Type 1 diabetes can affect people of any age and in any condition. Once known as "juvenile diabetes", we now know that people can be diagnosed as children or adults.
Symptoms often include extreme thirst, frequent urination and sudden weight loss, resulting in a medical visit during which a person undergoes a blood test – the only way to identify type 1 diabetes. For those with risk, their blood sugar level is dangerously high.
Type 1 diabetes is an autoimmune disease in which a person's immune system attacks insulin-producing pancreatic cells and can no longer produce insulin. Insulin is essential to life as it releases glucose, called blood sugar, which is essential for all cells in the body to function.
There may be immediate relief after the diagnosis, knowing that 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 someone with type 1 diabetes, life is never the same.
"After the diagnosis, I was ready to take the necessary steps to deal with this disorder, but the amount of work required to maintain your blood sugar in a safe interval when the pancreas stops producing its own insulin is unimaginable, "Kelly said.
This is different from the more common type 2 diabetes, most often seen in adults with obesity, high blood pressure and high cholesterol. Both types are thought to have a genetic component and both are linked to the pancreas.
CDC
In type 2 diabetes, however, the pancreas still produces insulin and it can be controlled with oral medications, exercises, and a diet.
There is currently no way to prevent type 1 diabetes, usually called T1DM, and there is no cure.
The ABC News Medical Unit has previously reported on available technology to facilitate diabetes management and solutions on the horizon.
For now, it's a very difficult to manage disorder, surrounded by thoughtful people and well-meaning people who can offer dietary advice without understanding type 1 diabetes.
"I choose when I eat my carbs with care," Kelly said. "So, if I want a pizza or a chocolate cake, I can … but I need to know how many carbohydrates are in that food and take insulin needed at the pump, so that my blood sugar is not skyrocketing, and I can not take too much insulin, otherwise my blood sugar will drop and I can go into a coma and worse. "
"I'm also considering variables such as if I will soon exercise or sleep soon and what is my current blood glucose," added Kelly. "I have to think about all these things before I eat and make insulin dosing decisions, so it's not helpful if other people comment on my meal choices."
New daily life
Every day, a person with T1D has to make many decisions: they must regularly check their blood sugar levels with a manual test, especially before eating; inject insulin, as no pill is available to treat T1D, or use an insulin pump device; and actively think about what they eat – how many carbohydrates each meal or snack contains.
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If they are sick, more active than usual, if they gain weight or lose weight, they have to adjust the insulin doses. these variables are difficult to manage.
Finally, they must pay attention to the dangerous signs of low or high blood glucose. They can begin to learn how to take care of their bodies better than any healthcare professional can.
And they have to do it every hour, every day, every year. There is no quitting or putting diabetes on hold.
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Carl Armato, CEO of Novant Health, recently released "A Future With Hope". T1D was diagnosed as a toddler. In the book, he shares important lessons about his 50 years of experience.
FloridaMom / Twitter
"Illness is the disease, but it's the way people treat diabetes and adapt to it that is essential to their quality of life – and, more importantly, to the question of knowing what's going on." Whether they have a life to live or not, "he said.
He admits that it is difficult to manage, but his experience tells him 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 get up and fight."
Kelly, a mother of two 20-year-old diagnosed children, works with her endocrinologist, registered nurse educator in diabetes, and sometimes a specialist nutritionist.
She considers the treatment of this disorder as "a battle".
"I still have my devices for diabetes with me.I still need to think:" If I have hypoglycemia, how will I get fast-acting sugar for it? to increase? ", she said. "I keep Gatorade next to me and glucose tablets in my purse" to improve blood sugar.
Katie Kindelan / ABC NewsA day in life
The doctors who treat people with T1D are endocrinologists. They can prescribe insulin, talk to a diabetic about their health, and check blood tests to measure their average blood glucose in the last three months to see how well they are controlling their blood glucose.
Kelly said, "For me, the online diabetes community is so important, emotionally and practically, it is very useful to share information and experiences with other people with type 1 diabetes. . "
"It's a lot to handle and most people in my life understand very little about what I really do to take care of myself," she added. "Well-intentioned people want to suggest" alternative "treatments to cinnamon or a special herb, and I have to say thank you, but I'll still need insulin."
"It's good to build relationships with other people with disabilities who really get it," she added, referring to people with diabetes.
Kerri Sparling was one of the first people to share their experiences online. She stated that when she started blogging, she was one of four or five T1 bloggers she knew about.
Today, she is a regular speaker at diabetes conferences.
"I started Six Until Me in May 2005 because I was fed up with" diabetes "on Google and I was proposing nothing more than a list of complications and stories scary, "she said. "Where were all the people who lived with this disease, as I have been since I was a girl, was I the only person with diabetes to feel lonely?"
She shares her online experiences seamlessly under such headlines as "Poem of Love for My Stupid Pancreas", "Most Diabetic in the World" and "Uh, can you eat that? 39; Halloween ".
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She wrote a book titled "Balancing Diabetes" but points out that she's not a health professional and joked that "I can not even drive with a stick".
But his openness about his experience is invaluable to a large community of people with type 1 diabetes who gather online in Facebook groups, at conferences and monthly meetings in their own community to avoid isolation. .
"For most of my life, I've been the only diabetic I've ever known," said Sparling. "Fortunately, this is no longer the case."
"When diagnosed so young, every event in life includes diabetes," she continued. "I went to promo prom with diabetes, I had my license for diabetes, I had my high school diploma with diabetes, I had a special pouch." sewn into my wedding dress for my insulin pump. "
On a daily basis, she thinks of diabetes every few minutes. From the moment she opens her eyes in the morning until closing her eyes at night, she has to make hundreds of small decisions to protect herself.
There is a "variable in everything you do – how to dress, what is the distance traveled," she said. "All this becomes automatic after a few decades."
If people with type 1 diabetes do not use the latest technologies, such as an insulin pump or a continuous glucose meter, they may need to inject themselves Insulin four to eight times a day and check their sting at least six to eight times a day. .
Sometimes they have to check more. They must always know how their body feels when the blood sugar level is too high or too low. If it is too high, some people describe feeling anxious, having a stomach ache, being very thirsty or not being oneself. If it is too low, which can be very dangerous, they can feel a headache, tremors, heart palpitations, confusion, insults to the speech or not even react.
CDC
"We do everything online, between I'm sick and everything's fine," she said.
But she does not let that stop her from living her life.
"You can do anything anyone can do except make insulin," Sparling said.
When talking about insulin, diabetes is one of the most expensive chronic diseases: 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. We know that some people ration their insulin, which can be fatal for someone with T1D.
There are generic versions, or alternative types of insulin, as well as patient assistance programs, which can help reduce the cost of insulin. The Society of Endocrinology and other advocacy groups for physicians and patients are asking the government to continue its initiatives regarding affordable insulin.
In the meantime, diabetes is their best advocate.
What about what I read online about pumps and sensors, and about the "artificial pancreas"? Is it a cure?
Technology in diabetes is evolving at the fastest pace in history and working to improve the lives of people with T1D. There are insulin pumps that can automatically decrease the amount of insulin you get if your blood glucose is too low or if it drops.
There are continuous blood glucose meters, or CGMs, that detect your blood glucose every five minutes without the need for a finger prick.
And now, there are systems through which CGM can communicate with the insulin pump in a "closed loop hybrid system". At Boston University and various start-ups in the country, research is underway to develop a "closed-loop system", or artificial pancreas, that does not require human intervention.
We are so close yet so far away. Even the most advanced systems on the market still require human input. If the blood glucose level is too low or too high, the sensors or pumps will beep and ask for a finger test. People should always enter the amount of food they are going to eat or make adjustments if they are going to exercise or not eating for a long time.
The machines may, however, encounter technical errors or malfunctions; the tubing may bend or become clogged, the sensor or pump may fall or the battery may run out.
You can not turn off your brain, no matter how good the technology.
Sparling, the blogger, said that she had "a hope of healing," but that "I have to live today."
There are many famous and successful athletes and professionals with T1D who never let their illness define their career. Mountaineer Will Cross climbed Mount Everest, professional football player Mark Andrews and Supreme Court Justice Sonia Sotomayor, to name a few, continue to realize their dreams while living with T1DM.
My relative has recently been diagnosed with T1D. What can I do to help?
"What people with diabetes will learn soon, is that you can not do it alone," said Armato, CEO of Novant Health. "A good, regular support system … is like the breath of life."
Here are some key tips for family and friends of people with T1D:
– Understand that it is a disease that requires attention almost 24 hours a day, 7 days a week. Have empathy. Be positive, not critical and without judgment.
– Learn about T1DM from trusted sources instead of transmitting what you have heard.
– Recognize the signs and symptoms of hypoglycemia.
– Know where your beloved keeps his glucometer, insulin supplies and glucose tablets.
– Know the phone number of the doctors of your loved one.
"You can do your best," said Sparling, "and things can still happen."
Online Resources
There are good and reliable online resources and meetings for people with T1DM, their families and friends.
Armato and Sparling emphasized the importance of benefiting from support.
"Find your support community, someone who can say" me too "and be by your side – it's very powerful – someone who will not judge you and who will hold you back when you'll be depressed, "said Sparling.
Here are some trusted organizations for people with type 1 diabetes:
– American Diabetes Association
– JDRF (Juvenile Diabetes Research Foundation)
– University Network on Diabetes
– SixUntilMe
– BeyondType1
– DiaTribe
– Children with diabetes
Dr. Tiffany Yeh is currently an Endocrinology Researcher at New York-Presbyterian Medical Center Weill Cornell and a member of the ABC News Medical Unit. Eric M. Strauss is the editor of the ABC News Medical Unit and is married to Bridget Kelly. He welcomes your comments on Twitter: @ericmstrauss
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