Diabetes is one of the world’s greatest health challenges. Generally speaking, diabetes is when your pancreas won’t or can’t produce enough insulin for your body to function correctly. Type 1, also called juvenile or insulin-dependent diabetes, is when the diabetic’s body relies on insulin in order to stay alive. This type is far less common than type 2 diabetes. Having no way to prevent type 1 diabetes, more than 18,000 youths were diagnosed each year in 2008 and 2009, according to the Centers for Disease Control (CDC). Type 2 diabetes can develop at any age and is generally associated with exercise and weight maintenance. Although most type 2 cases can be prevented through exercise and proper eating habits, some cases of type 2 may not display symptoms, leaving their victims in the dark. Some symptoms of type 1 and 2 diabetes are very similar such as increased thirst, frequent urination, hunger, fatigue and blurred vision.
I am not a diabetic but I grew up around them, therefore, I like to believe that I have a firm knowledge of diabetes. I may not understand the exact measurements or proper math that goes into maintaining a healthy diabetic life, but I know more than I should about the survival and emergency facet of this disease. My grandmother, grandfather, sister, cousins and (now) little brother are victims of diabetes. What can I say? We are a family of diabetics. Of course my sister, little brother and grandmother mostly affected me and impacted the way I view this disease.
My sister, Marissa, was 9 when she was diagnosed with Juvenile Diabetes. The only visible symptoms my sister had were extreme thirst, frequent urination, and fatigue. Marissa was always a hard worker. When she became sluggish at her basketball practice my dad knew something was up. He assumed her excessive bathroom breaks was a way for her to get out of the team’s cardio workout. After being rushed to the emergency room at Children’s Hospital of Philadelphia (CHOP), it was proven that Marissa’s life would change forever.
There were countless test strips, numerous needle injections, and endless hours at CHOP (in a waiting room that seemed all too familiar), and one too many mornings of a delirious sister whose blood sugar was way too low to function. I was only 4 when my sister got diagnosed. I was 10 when I began to understand Diabetes and I started these “delirious morning” routines. By 11 I knew exactly what to do when my sister wouldn’t wake up. A cup of orange juice or a spoonful of icing would always do the trick. It was a recurring incident so I knew exactly what I needed to do.
She was always angry when she was low, but I never seemed to be fazed or panicked by it. Yes, her uncontrollable sass would get frustrating when the cup of OJ ended up being thrown all over my Twilight poster, but I never understood why she was like this until recently.
According to a HealthDay article, Diabetes can take a toll on your emotions by Serena Gordon, “Extremes in blood-sugar levels can cause significant mood changes, and new research suggests that frequent changes in blood-sugar levels also can affect mood and quality of life for those with diabetes.” As a young kid, I didn’t know this I just always thought Marissa was being the mean, older sister I thought she was.
When Marissa was diagnosed, she was the youngest recorded in our entire family to get diagnosed. It seemed “lucky” that my grand mom was also diagnosed as a diabetic. We all lived under one roof and it seemed as if they could teach each other how to take care of their condition. My grandmother had type 2 diabetes, which eventually led her to kidney failure. Her diabetes caused many health complications but kidney failure was her main cause of death.
When she was diagnosed with kidney failure, she was eventually put on dialysis for 6 weeks and when it didn’t seem to work she was put on hospice. My grand mom died two days after my 15th birthday. Prior to her death, she was unconscious and didn’t know anyone’s name. She was completely out of it but the day of my birthday I was given the best gift possible – the ability to have one last conversation with my grand mom.
A conversation with her actually remembering who I am and why that day is important. It was scary to watch my grandmother being consumed by her disease.
Marissa’s diagnosis and my grandmother’s death are stories I’ve heard or relieved several times. Unfortunately, I never understood the dramatic feelings that strung along with Marissa’s ER trip or my grandmother’s diagnosis until February 13, 2016. This was the day my little brother, Nico, was diagnosed with Juvenile Diabetes. I did not watch my sister get diagnosed but I was there when my brother was. It was a lot different because I always remembered my sister as a diabetic. I was so young when she was diagnosed, therefore I never saw her as anything else. Nico was always the healthiest, skinniest, most fit one out of the four of us. No one would have even guessed that another one of us would have been diagnosed, let alone Nico.
Nico is a wrestler and ironically, like my sister, we had our suspicions while he was playing a sport he loved. I came home for the weekend from college because it was his last wrestling meet until high school. My sister, now 25, came down as well. It was supposed to be a big family weekend but it ended up being one we spent – yes, you guessed it – in CHOP.
Nico is skin and bone – there is nothing to him. I didn’t think it was possible for someone as skinny as him to lose even more weight. When I saw Nico I realized immediately that he lost weight and grew a lot. He is 14, 5’9” and extremely skinnier than usual. His face was sunken in and his bones were all too visible. During his matches, we noticed his lethargic movements. I didn’t think anything of it until I began to realize the frequent bathroom trips and endless chugging of water bottles. No one said anything because we all knew what it was.
After the wrestling meet, we went to my sister’s apartment. There, we did a self-diagnosis. We tested Nico’s, our dad’s and my own blood sugars to compare the results. Three different times and three different blood machines gave the same results for Nico’s blood sugar: “HI.” This generally means his blood sugar was above 600. My dad’s and mine came up in the range 90-115, which is a healthy range. On top of that we tested our Ketones, which measures the amount of sugar in your urine. The darker the test strip turns, the more sugar and the worse the outcome. Of course, Nico’s came up positive for Ketones, whereas we all had healthy results.
My mother seemed to be in disbelief. How couldn’t she? The baby of the family was about to become a diabetic. His life was about to change dramatically and so was hers… again. My mom will have to wake up at 2 am every night to make sure Nico was still alive and in range. She did it with my sister and just when she thought she was done getting minimal hours of sleep she has to do the same for Nico. Now it’s back to constantly counting carbohydrates, drawing insulin and measuring every food that goes into her kid’s mouth. When we finally came to the conclusion to take Nico to the Emergency Room we knew where to go to get the quickest and best treatment. Off to the CHOP waiting room we go!
While in CHOP Marissa and I reminisced about the endless hours we spent here for her and our other brother, Mickey’s, appointments. This is when I realized how familiar this hospital was. It’s huge and I was very young when I was last there but something about this hospital felt recognizable and strangely homey. We all grew up in this hospital. Mickey grew up in Neurology and the ADHD clinic. Marissa grew up in Endocrinology. I grew up in that waiting room with the cheap yet entertaining toys. Nico was the only one out of the four of us that has never seen or remembered the inside of this hospital. I doubt he even knew it existed before that day but now he will be there once a month just like Marissa was. That hospital will be his second home for the next couple years.
The nurse told us Nico lost a significant amount of weight. Originally 107, his undiagnosed diabetes made him drop to 95 pounds. Imagine a 5’9” 14 year-old that weighs 95 pounds. That’s right – Skeleton. The doctor was amazed at how much we knew about juvenile diabetes and oddly happy that she didn’t have to explain all the nitty-gritty information. Well for God’s sake, you have a diabetic herself, the mother who took care of her, her fiancé that has seen it first hand, a sister that got tortured with a diabetic’s deliriousness and a father that took this diabetic to the emergency room a few times in the past while away at tournaments. Damn straight we know what we are talking about. The nurse said Nico was the first self-diagnosed diabetic that she has seen come into the hospital. We caught it quick and, as wicked as it may sound, we were once again “lucky” to have a previous diabetic in the family to help catch this diagnosis.
Nico barely cried. I think it was because he knew before we got in the car to go to the hospital. He was immediately hooked up to IVs and doctors periodically checked his sugar to watch it gradually return to a normal range. He took it like a champ. In fact, he was even comfortable to make side jokes. We all joined in and joked about how him and Marissa have always been alike. This just adds to the list of commonalities. Nico received an abundant amount of “stay strong messages” and it seemed to make him think more positively about this new chapter in his life. Even during the next three nights spent in CHOP he remained was optimistic. He was ready (and partially excited) to learn how to take care of himself and was ready to eat all the food they would let him order. Priorities. It’s ironic that many families with newly diagnosed children have came to my mom and sister for advice but now we have another newly diabetic to take care of ourselves.
I believe that Nico’s positivity makes him shine and sets him apart from most newly diagnosed diabetics. I couldn’t stop crying that night about his diagnosis because of the past experiences we have all had with diabetes but I realized that he seemed to be more positive than anyone else. I realized that I needed to be strong for my little brother because he was too busy taking care of his health to be strong for both of us. Of course my mom had her moments exhausting herself over the stress that comes along with diabetes but Nico was always there to hug – to tell her everything will be okay. I think that is something many people forget. Everything will be okay. When Nico was diagnosed, the words that came out of the doctor’s mouth seemed unforgettable – “When you have diabetes, your whole world does not change. You think that your life is going to change forever but when you have diabetes you can do all the same things; you just need to take care of your health while doing it.” With positivity like Nico’s, I know he will be fine adjusting to his new diabetic life.
In every family, there’s always an unspoken competition for who’s the favorite or most perfect child. The Perez family might take this competition (and others) too seriously and I blame my dad for the excessive competitive genes. When Nico was diagnosed, it became an undeclared competition of “who can take care of their diabetes better” between Marissa and Nico. Although Nico’s diagnosis was extremely emotional for all of us to encounter, it is nice to know that him and Marissa are helping each other take care of their conditions. Marissa even seems to be taking care of her diabetes more than before. Hey, if competition is what it takes, so be it.
As a family, we are going to get autoimmune testing done. This means getting a simple screening where blood is drawn to see if I am positive or negative for diabetic autoantibodies. If I am negative my risk for diabetes is low but still possible. If I test positive it does not mean I will get type 1 diabetes but instead it means that I have a greater risk. If tested positive I will get blood tests done once or twice a year.
Diabetes does not stop with Nico. Usually, if you are a man with type 1 diabetes the odds of your children having this condition are 1 in 17. As for women, it is 1 in 25 if you have the child before you are 25 and 1 in a 100 if you are older than 25 when you conceive. Unfortunately, this risk is doubled if you were diagnosed before you turn 11. Marissa falls into that category. I am not a diabetic but I grew up around them and I will continue to grow around them and witness more diagnoses with the children of my siblings, cousins and I. This is something that will never change. Diabetes is a disease that affects everyone involved – the diabetic and their family. In my family, diabetes has and always will be an emotional ride for because both parties are all affected by it everyday.
Every five minutes two people die of diabetes-related causes and in those same five minutes 14 adults are newly diagnosed, according to the CDC. Diabetes is a life-long disease and it is scary to think that forgetting your blood machine or missing one needle can make you miss your whole life. Diabetes is a big issue in today’s society and not many people shine the light on this topic as much as it should.