Type 1 diabetes, a chronic condition in which your body doesn’t produce insulin, might just be one of the most misunderstood ailments out there. While Type 1 diabetes can be managed by taking insulin and making healthy lifestyle choices, it can’t be cured by losing weight, exercising, or quitting smoking.
An estimated 5 to 10 percent of people with diabetes have Type 1. While Type 1 diabetes can occur at any age, it is usually diagnosed in children and young adults. Two Swainsboro natives, Mallory Purvis Weber and Trevor Radford, are proof of that—and here’s what they wish people knew.
Weber received her diagnosis back in 2013 at age the age of 20. She was losing a considerable amount of weight, feeling sick after meals, and was extremely thirsty all the time. After multiple trips to the doctor, the wife and mom of two finally had a name for the culprit, although she and her medical team, a specialist in Savannah, would have to work together to figure out which type of diabetes she had.
The news, she says, was devastating and impacted her life immediately. “I felt like my world had turned upside down when I was diagnosed. I knew it was going to be a lifelong commitment. I was sitting in the waiting room with my mom and Eric. I can just remember telling them I wouldn’t be able to do it. I asked the same questions asked by everyone else who gets diagnosed with something. ‘Why me? What did I do to deserve this?’ No one else in my family has or had diabetes, so it was definitely a shocker.”
Radford, on the other hand, was even younger at the time he was diagnosed in 2017; to be exact, he was only 13. His mother, Mary Radford, calls the day he was diagnosed as a Type 1 diabetic the “worst moment” of her life thus far because she, like Weber, realized what the long-term effects would be for her active teen, an Emanuel County Institute athlete no less.
“Trevor had been complaining of increased urination for three or four days. Otherwise, he appeared healthy,” Mary said. “I was afraid he had a kidney infection, so I made an early morning appointment with Dr. James Clifton. The plan was for Trevor to continue on to school for baseball tryouts after the appointment. He was given a urine test when we arrived, and I was quite surprised when the nurse returned to the room and asked if he had eaten anything before coming. He hadn’t, but being a nurse myself, I asked why she was concerned about this. The nurse then told us that he had a large amount of glucose in his urine. That was the bar far the worst moment of my life to date.”
Instantly, her medical knowledge kicked in and the picture of things she missed came together like a set of flood games had opened. According to Mary, her son had every small and seemingly inconsequential symptom of Type 1 diabetes that existed. These signs are missed by parents more often than they are caught, and she admits she was no exception to that. For example, Radford had complained a few times he was having trouble seeing the board in class, which Mary attributed to him sitting toward the back of the room. He was constantly drinking water, which she chocked up to him being very active and preparing for baseball tryouts. When a friend mentioned it looked as if Trevor was losing weight, she didn’t notice it herself and wrote off the statement. Lastly, her son was eating more than usual, a symptom she thought was normal for a growing teenage boy. Up until the increased urination, everything seemed normal at face value. As it turns out, those deceitfully harmless symptoms were really textbook signs of Type 1 diabetes: blurred vision, increased thirst, increased hunger, weight loss, and increased urination.
The urine test, Mary continued, was followed by a finger stick. That simple procedure revealed Radford’s blood sugar was very high at 715. Dr. Clifton delivered the news that she had already deducted and offered to hospitalize her son immediately. Instead, because she was a registered nurse, Dr. Clifton felt she could manage Radford’s ailment at home long enough to buy some time for an emergency appointment with a specialist. In lieu of scaring him more than he already was at the time, that is the course of action the Radfords took.
“Trevor was initially scared, as we all were. In the beginning, he was most fearful of his health. He didn’t understand the diagnosis fully, and he was afraid he would die. After the initial shock and understanding that this was a lifelong illness, he feared more about his ability to ‘be normal.’ He worried what his friends would think, if kids would pick on him, if he would be able to play sports. It took time and exposure for him to realize things would be different, but he could still live what his teenage mind considered to be a ‘normal life’ if he accepted his diagnosis and did all the things he needed to do.”
Putting their best foot forward in terms of maintaining some sense of normalcy, the Radfords decided he would go on to baseball practice the very same day he received his diagnosis. While there, his coaches and teammates prayed for him.
When Radford got home, the family sat down together with a pile of new medication and equipment. They had a tough, frank conversation with Radford about what his diagnosis meant and the steps he must take in order to care for himself. Radford did his very first finger stick and insulin injection right by himself at the ripe age of 13, and his mom says he’s been a trooper every step of the way.
“When I count my blessings, I count this one twice—that I was led to take Trevor to the doctor that morning. The increased urination was another symptom that was so small I had to convince myself that he needed to go to the doctor,” Mary commented. “As explained to me by his specialist, Dr. Christopher Houke at Augusta University, Trevor was lucky. The vast majority of children with Type 1 diabetes are not diagnosed until their parents go in to wake them up and they will not arouse because they are in diabetic ketoacidosis, a life-threatening coma caused by prolonged elevated blood sugars. We are thankful daily that though this has been and continues to be very difficult to deal with, our son has been spared any major medical complications since his diagnosis. I pray often for all of the people and families affected by this disease and especially for those who lack medical knowledge as I feel that even as a nurse this disease is extremely scary and difficult to manage.”
Today, both Radford and Weber are doing their best to take care of their bodies while simultaneously raising awareness about the truth of Type 1 diabetes. They’ve made the necessary life changes and continue to push the message that there’s no fault associated with being a Type 1 patient.
Weber’s treatment includes an insulin pump to monitor her diabetes. She says it works like a pancreas, giving her a programmed amount of insulin per hour. When she eats, she has to work out the amount of carbohydrates in her meals. She then programs the amount of carbs into the pump, which, in turn, gives the right amount of insulin. She also has a continuous glucose monitor, or “CGM” for short, which gives her a graph of constant information about her sugar levels. The CGM will sound an alarm if those sugar levels are too high or too low so she can take action before the levels escalate into a bigger issue.
“As much as I hate to admit it, diabetes impacts my life a lot,” Weber said. “It’s not all the time and it’s not always in massive ways, but it has definitely impacted my personal and professional lives greatly. Even though Type 1 diabetes isn’t caused by unhealthy habits, there can still be a lot of self-judgement as you manage it. It’s like being graded over and over again each day. Every time I check my blood sugar, I’m finding out if I get a ‘good grade’ or a ‘bad grade.’ There can be a lot of guilt and frustration if my blood sugar is too high. I sometimes ask myself, ‘Why didn’t I give the right amount of insulin? How could I have gotten that wrong? What did I do yesterday that is making this happen? Why didn’t I feel my blood sugar dropping before now?’”
The changes Radford made started with his diet. He now only eats simple sugars. He also doesn’t snack and eat without thought the way he did before his diagnosis.
In addition, Radford and his entire family have learned preparation is key. Ahead of traveling or attending events, two things must be done: packing all necessary supplies and checking his blood sugar.
Apart from the symptoms he experiences from high and low blood sugars, he, too, like Weber, struggles with the daily upkeep of the disease, which includes checking blood sugars, taking insulin, rechecking, and treating lows.
What’s more, Radford’s situation is often intensified on the danger level in that he also suffers from hypoglycemic unawareness, meaning when his blood sugar starts to drop, his body doesn’t give him any signs or he can’t recognize the signs early on. His blood sugar is sometimes extremely low before he recognizes the symptoms, and it rarely arouses him from his sleep. Consequently, he rarely stays away from home overnight. To help in that way, starting July 24 in Nashville, Tennessee, the Radfords will attend a 10-day training camp required to bring home a diabetic alert service dog.
Today, Mary says her son strongly wishes people realized the difference between Type 1 diabetes and Type 2.
“Trevor gets a lot of comments like, ‘You’re too skinny to have diabetes,’ or, ‘You shouldn’t have eaten all that sugar.’ Type 1 diabetes is an autoimmune disorder where his body’s immune system attacked and killed the cells in his pancreas that make insulin. The exact cause of this is unknown, however it is not related to body weight or foods that he ate. Because the exact cause of his immune system attacking his pancreas is unknown, there is no known way to prevent the development of Type 1 diabetes.”
On that note, Mary continued, saying she as a mother wishes more people understood Type 1 diabetes as the silent disease it is. Outwardly, her son looks like a normal, healthy teenager. The reality is completely different, though. Struggling with the symptoms of high and low blood sugars daily and managing his blood sugars—those are 24/7 jobs. Every single thing he eats has to be accounted for, meaning his blood sugar level has to be checked, the carbs and sugars in his food have to be checked, and all of that has to be manually calculated for a dose of insulin by shot or has to be entered into his pump to be delivered a dose of insulin by pump. According to his mother, there are times where he does eight to 10 finger sticks and insulin injections a day.
“You cannot look at a child in most cases and see that their blood sugar is high or low. When Trevor has high blood sugars, he has blurred vision, increased urination, constant and unrelieved thirst, increased hunger, and irritability. When he has low blood sugars, he feels faint, nausea, jittery, and sweaty. All of these things have to be taken into account before he does anything. You can’t catch a ball very well if your vision is blurred because your blood sugar is high. It’s a balancing act between highs and lows and being prepared for either so that he can still do all of the things he loves to do.”
Surprisingly enough, there are some silver linings to Type 1 diabetes. For starters, there have been a lot of great strides in terms of caring for and managing the condition, even in the four short years since Radford was diagnosed. The CGM technology, Mary says, is a lifesaver for her son and others like Weber in that it drastically reduces the amount of finger sticks per day. This type of research and technology advancement is paramount to improving the quality of life and long-term health of Type 1 diabetics.
Weber expounded on the ways in which having diabetes has surprisingly added to her life. She explained that nine years ago, she was young and had no clue what she was doing. Put simply, Weber saw her diagnosis as a “death sentence.” Such is not the case today.
“Now, I can say God is using this disease for His glory in my life and the life of my family,” Weber said. “Diabetes has brought a lot of wonderful things into my life. I’m more empathetic toward anyone with a chronic condition, and I try hard to remember that you don’t usually know all that’s going on in a person’s mind, so I try to just be kind to everyone. I also have a really great support system. My family definitely helps keep me in check. My children have even learned what to do to help me in a hypo (or low) situation.”
As for what people can do to help, Mary suggests donating to the Juvenile Diabetes Research Foundation, which does great research and offers helpful programs for Type 1 patients.
Another thing people can do, according to Mary, is support not only to those with Type 1 diabetes but their caregivers as well. The condition can have deadly consequences when mismanaged or altogether ignored or overlooked. Extreme high or low blood sugar levels can cause severe illness or death, and these instances take place in a matter of minutes or hours. She contends that it is “extremely stressful” to worry about the health and safety of an adolescent Type 1 diabetic like her son while in the care of others, like daycares and schools. Luckily, the administration, teachers, nurses, athletic trainers, and coaches at ECI have been very involved, understanding, willing to listen, and ready to learn along with the Radford family as they embarked on this journey with their Bulldog. Yet, Mary offers that you don’t have to have a patient in your family or in your care in order to help; the general public can be allies just the same.
“I encourage everyone to take an interest in this condition. Get involved if you know someone who has Type 1 diabetes. Ask questions. Learn the signs of symptoms of high and low blood sugars so you can help as situations come up. Let families know that you understand and want to make sure that you are doing all that you can to keep patients safe and healthy.”
As a general rule of thumb, if you know someone who is passed out from a diabetic emergency, immediately call emergency services and react to the situation as if the patient is “having a low” or experiencing severe hypoglycemia. If the patient is unconscious, you may have to administer emergency glucagon, either nasal glucagon or with injectable glucagon via a Glucagon kit. If the patient are conscious, fast-acting glucose needs to be taken immediately. (This means juice boxes, candy, glucose tablets, or any other sugary food or drink that can be consumed easily.)
For more details about diabetes, visit diabetes.org or beyondtype1.org. Both of these sites have useful information about the condition itself, resources for family and friends, information about various diabetic programs, donation measures, and advocacy tips.