Growing up, I always knew there was something different about several of my family members. They had to prick their fingers multiple times a day, give themselves shots and some had a weird box-like object attached to their waist. As I grew older, I learned they have an all too common autoimmune disease known as Type 1 Diabetes.
In Type 1 diabetics, the body’s immune system attacks the cells in the pancreas that make insulin. This classifies the disease as an autoimmune disease. With their bodies not producing insulin, those with Type 1 are subject to horrific highs (high blood sugar) and devastating lows (low blood sugar). Ultimately, having highs and lows can even cause a person with Type 1 to die. It is believed that Type 1 occurs due to genetic and environmental causes, yet scientists still don’t fully know what causes it. There is nothing you can do to prevent Type 1, including diet and lifestyle changes, and there is nothing you can do to get rid of it.
People who live with Type 1 must balance insulin doses constantly and test their blood sugar by pricking their fingers six or more times a day.
The Juvenile Diabetes Research Foundation states, “While insulin injections or infusion allow a person with T1D to stay alive, they do not cure the disease, nor do they necessarily prevent the possibility of the disease’s serious effects, which may include: kidney failure, blindness, nerve damage, heart attack, stroke and pregnancy complications.”
JDRF also notes there are 1.25 million Americans living with Type 1; each year, 40,000 people are diagnosed with Type 1. In the U.S., five million people are expected to have Type 1 by 2050, and most concerningly, one-third of Americans with Type 1 are not managing their blood glucose levels.
The disease ultimately killed my grandmother’s brother and then later on in her life, my grandma was diagnosed with the disease. My Uncle Matt has the disease and two of my cousins, Austin and Jordan, were diagnosed with Type 1 as well.
I became more interested specifically in Type 1 diabetes in January of 2015 when I heard of a little girl, Kycie, on Facebook who needed prayers. She had been ill for a few days, when her mom took her to the emergency room.
“She was diagnosed with Type 1 Diabetes and a blood glucose level of 1048; normal is 90-110,” Kycie’s website states. “She was LifeFlighted to Salt Lake City and suffered two seizures and fell into a coma. After reviewing an MRI, doctors told Kycie’s parents that the high glucose caused her brain to swell and ultimately resulted in severe brain damage.”
Kycie underwent therapy for weeks, and finally in May of 2015, she was able to return home. However, Kycie still required care 24 hours a day, due to the brain injury which left her unable to speak, walk or feed herself. Her brain injury, combined with her inability to care for herself and the unpredictable highs and lows of Type 1, made her situation dire.
I followed Kycie’s progress on her Facebook page, cheering along with everyone else at the video updates. It was heart-wrenching, however, to see this formerly bright, bubbly little girl barely able to roll over because of brain damage caused by Type 1. Tragically, she developed pneumonia and had to be re-hospitalized. Kycie eventually returned home where she passed away three days later, on July 11, 2015.
When I learned of Kycie’s death my heart broke. I learned through her journey and her family’s willingness to share it with the world the horrible complications associated with Type 1 diabetes, especially if they go undiagnosed. With four people in my family diagnosed, my mind immediately went to them. This could happen to them.
I reached out to my two cousins via email – Austin, 24, and Jordan, 25 – who just so happen to be brothers. Austin was diagnosed with Type 1 first in 2005, and then in 2009 Jordan was diagnosed as well.
I asked them what living with Type 1 was like. While I know they can’t summarize all of the effects the disease has on them, their responses do provide insight into what living with the disease is like.
“Having had Type 1 for seven years now, it is becoming increasingly difficult to answer this question,” said Jordan. “Living with Type 1 simply feels like living. I no longer have to think to check my blood sugar – it becomes instinctive after doing it four to six times daily for seven years.”
“Living with Type 1 diabetes is nothing you can tell somebody by reading a book,” said Austin. “You never truly understand until you are diagnosed and deal with it 24 hours a day for the rest of your life. There is no break and there is nobody that can take care of you. Ultimately it’s how you choose to take care of yourself.”
Jordan told me that one of the hardest aspects of the disease for him is maintaining blood sugar control.
“Blood sugars spike and fall unexpectedly in response to sickness, exercise, stress, seasonal changes and diet,” Jordan said. “It can be extremely frustrating to follow the same routine you did yesterday but have a harder time controlling your blood sugars one day to the next. I am a medical student, and given the inevitably imprecise control of blood sugars and the cognitive and physical side effects that result from deviations in blood sugar, I am limited in the care I can provide patients. It would be irresponsible for me to perform extended surgeries when I may be required to leave the OR [operating room] to attend to my blood sugar. In that regard Type 1 has limited me.”
Type 1 has many myths surrounding it. The most common is that eating too much sugar causes diabetes. According to JDRF, research shows that drinking sugary drinks is linked to Type 2 diabetes, “but this is far from a cause-and-effect, and it is not the only factor.”
Images such as the one below claiming that soda pop can cause diabetes caused outrage amongst many people in mid to late 2015.
Photo courtesy of The Huffington Post
Another respondent to the claim the above image makes of drinking soda pop and getting diabetes, was a mom of a Type 1 son who has a diabetic alert dog. Luke and his dog, Jedi, share their story on Facebook through Luke’s mother’s daily posts about their experiences.
Her post stated, “Diet and exercise have nothing to do with the onset of Type 1 Diabetes. It also does not account for many cases of Type 2. Genetics and other factors play a big part as well. The reason these jokes are NOT funny is that people actually think they are truths. Further hurting our fight for true awareness and ultimately a cure. We don’t joke like this about other serious medical issues that take countless lives each year. Why isn’t diabetes off limits too?”
Type 1 Diabetes is a serious issue, yet it seems to me that it is rarely talked about on TV and other platforms. With only five percent of people with diabetes having Type 1, it starts to make sense. People start to combine attributes of other types of diabetes to Type 1 diabetics. Type 1 diabetes frequently gets confused or mixed up with Type 2 diabetes, which is the most common form of diabetes. Type 2 diabetes develops when the body doesn’t use insulin properly; the body still produces it, but the body doesn’t use it correctly, leading to insulin resistance.
With all the misconceptions surrounding Type 1, I decided to ask my cousins what they wished people knew about Type 1.
“The biggest thing I want people to know about diabetes is that even though it can get hard some days – that it is possible to live a normal lifestyle,” Austin said. “I wish people had more knowledge about Type 1 Diabetes. Everyone just thinks we need sugar when that is only true if we are hypoglycemic [having low blood sugar].”
“I want them [people with Type 1 who are struggling] to know that you can lead a fulfilling life,” said Jordan. “It takes a lot of hard work and vigilant attention to detail, but it is totally worth it to strive for tight glycemic control. For those unfamiliar with Type 1, I think it’s important to know that there are good treatments for this disease and that they require a lot of hard work and dedication.”
While I know I get frustrated with images portraying Type 1 as something preventable by not eating sugar, I asked for my cousin’s thoughts on images like it.
“I am not personally offended by such advertisements, but I am often dismayed at the lack of knowledge displayed by some members of the general public,” said Jordan. “I understand how Type 1 and Type 2 can be easily confused, but I don’t believe those suffering from Type 2 deserve ridicule or consternation either. It is true that lifestyle modification is the most effective way to prevent Type 2 and mitigate future complications like nephropathy, neuropathy and retinopathy, but shining a negative light on those who are, for whatever reason, unable to modify their lifestyle and subsequently develop Type 2 need to be supported and empowered rather than shamed and humiliated.”
While diabetes is hard, no matter what form of the disease you have, Austin reminds us of his daily struggle. “Type 1 is hard to deal with; it can be extremely frustrating. It can ruin your entire day if your sugars aren’t regulated, and [it] wears you down over the years. It’s something you must accept and deal with, which can be the hardest part when you are diagnosed at a young age. You must always remember it is possible to live a long and healthy life. You just cannot ignore or run away from it.”
November is National Diabetes Month and with the disease being so prevalent in our country, I encourage everyone to learn the truths behind Type 1 and Type 2 Diabetes.
Photo by Erin Mahaney