Learning your child has type 1 diabetes is scary.
Learning your child has Duchenne is heartbreaking.
Learning your child has both is absolutely dreadful.
My son Dylan was diagnosed with type 1 diabetes when he was 3 years old and Duchenne muscular dystrophy when he was 5 years old. There was no family history of either disease. Both diagnoses were totally unexpected and came as a complete shock. At the time, our doctor said Dylan was the only person in the entire world that he was aware of who’d ever been diagnosed with both Duchenne and type 1 diabetes. You’ll learn more about our story at the end of this post.
I realize most of you are well-aware of the debilitating effects of Duchenne, so I won’t cover that in this blog post. Instead, I want to make sure you are aware of the impact of diabetes, how diabetes can complicate the treatment and health of someone living with Duchenne, and what you can do to help prevent the development of diabetes. I feel this topic is especially important since very little research has been conducted on the relationship between Duchenne and diabetes.
Overview of Diabetes
Diabetes is a disease in which blood sugar levels are too high. Sugars from the foods we eat enter the bloodstream to be used by our cells for energy. Insulin, a hormone normally produced by the pancreas, helps regulate blood sugar by signaling the cells to take in glucose from the blood. In type 1 diabetes, previously known as juvenile diabetes, the pancreas does not produce insulin. In type 2 diabetes, cells don’t respond to insulin effectively (known as insulin resistance), so instead of the sugar being taken in by cells for energy, it accumulates in the bloodstream. Too much sugar in the blood is known as hyperglycemia.
Approximately 193,000 Americans under age 20 have been diagnosed with diabetes.1 High blood sugar is extremely damaging to the body and can cause other serious health problems, such as heart disease, vision loss, and kidney disease. According to the CDC, diabetes was the seventh leading cause of death in the United States in 2017. 2
Risk Factors for Diabetes
Are Common in Duchenne
Of particular concern, as it relates to Duchenne, are the number of the risk factors for type 2 diabetes that are common among the Duchenne population. Specifically, those risk factors include:
- Being overweight or obese
- Having an inactive lifestyle
- Having high blood pressure
- Having low HDL cholesterol and/or high triglycerides
- Having depression 3
Studies of Metabolic
Complications in Duchenne
As mentioned earlier, there hasn’t been a lot of research related to Duchenne and the development of diabetes. A search in PubMed for Duchenne muscular dystrophy and diabetes returns just 51 results from the past 5 years and only 90 all-time. Very few of those papers involve a study focused on the relationship, but instead simply mention the names of the two diseases.
In 2017, researchers published a paper in the Journal of Child Neurology that included results of a survey in which caregivers of males with Duchenne or Becker muscular dystrophies were asked about the presence of secondary conditions. The survey revealed 27% of the boys were clinically depressed, 20% were overweight, and 13% had high blood pressure; all risk factors for diabetes.4
Obesity, Insulin Resistance, and Abnormal Blood Lipid Levels in Duchenne
A study of 63 boys with Duchenne between the ages of 5 and 19 years old revealed 28% percent qualified as obese when measuring body mass index and 70% were considered obese when using percent of fat mass. Insulin resistance was present in 29% of the boys and 40% had low HDL cholesterol and/or high triglycerides, both of which were steroid independent.5
Impaired Glucose Tolerance
A 2018 study titled, “Impaired Glucose Tolerance in Adults with Duchenne and Becker Muscular Dystrophy” sought to determine the response to an oral glucose tolerance test in adult males with Duchenne muscular dystrophy, and to investigate whether body composition contributes to any variance in the glucose response. They found blood glucose values were higher in the Duchenne group compared to the control group at the 60, 90, and 120 min marks. Blood glucose values two hours post glucose ingestion show that 53% of the Duchenne group met the American Diabetes Association’s criteria for impaired glucose tolerance compared to 0% of the control group.6
Exons Associated with Obesity and Insulin Resistance
Perhaps the most interesting research I found was a 2014 study published in the International Journal of Endocrinology. The study intended to determine the frequency of insulin resistance in patients with Duchenne muscular dystrophy and to identify if any exons of the DMD gene associated with obesity and insulin resistance. Obesity (23%), hyperinsulinemia (49%), and insulin resistance (36%) were observed in the DMD/BMD patients independent of corticosteroid treatment. The researchers also determined patients with deletions of exons 45 or 50 from the DMD gene are at risk for developing insulin resistance.7
Identifying Diabetes and
Related Metabolic Complications
Metabolic complications of obesity including hyperinsulinemia, insulin resistance, and type 2 diabetes are often silent and need to be screened for to identify and appropriately manage the condition.8
The A1C test measures the average blood sugar level over the past 2 or 3 months. An A1C below 5.7% is normal, between 5.7 and 6.4% is considered to be in the prediabetes range. An A1C of 6.5% or greater is in the diabetes range.
Fasting Blood Sugar Test
The fasting blood sugar test measures blood sugar after an overnight fast. A fasting blood sugar level of 99 mg/dL or lower is normal, 100 to 125 mg/dL indicates prediabetes, and 126 mg/dL or higher indicates diabetes.
Glucose Tolerance Test
The glucose tolerance test measures blood sugar before and after drinking a liquid that contains glucose. The test begins by obtaining a fasting blood sugar level. After a fasting blood sugar level has been taken, the patient is able to drink the liquid containing glucose. Blood sugar levels are checked at 1 hour, 2 hours, and possibly 3 hours after drinking the liquid. At 2 hours, a blood sugar level of 140 mg/dL or lower is considered normal, 140 to 199 mg/dL is the range designated as prediabetes, and 200 mg/dL or higher suggests diabetes.9
||5.7% – 6.4%
||6.5% or greater
|Fasting Blood Sugar
||99 mg/dL or below
||100 – 125 mg/dL
||126 mg/dL or above
||140 mg/dL or below
||140 – 199 mg/dL
||200 mg/dL or greater
Type 2 diabetes prevention is proven, possible, and powerful. Taking small steps, such as following a high-quality diet and increasing physical activity (as appropriate, based on the health of the individual), can help prevent or delay type 2 diabetes and related health problems.
Diet and Nutrition
Following a healthy nutrition plan can help prevent excessive weight gain, aid in maintaining appropriate blood sugar and lipid levels, and even help prevent or alleviate depression.10
Unfortunately, there hasn’t been enough research on nutrition in Duchenne to establish specific recommendations. According to the 2018 Care Considerations, nutrition recommendations for Duchenne should be adapted from those for the general population. The Care Considerations also make clear that a patient’s care team should include a registered dietitian who should meet with the individual living with Duchenne at every visit, beginning at diagnosis.11
A registered dietitian can help create a custom eating plan that takes into account the patient’s weight, medicines, lifestyle, and other health concerns. According to the National Institute of Diabetes and Digestive and Kidney Diseases 12, an eating plan created to prevent or manage diabetes includes:
- Limiting foods that are high in sugar
- Eating smaller portions, spread out over the day
- Being careful about when and how many carbohydrates you eat
- Eating a variety of whole-grain foods, fruits, and vegetables every day
- Eating less fat
- Using less salt
Some additional resources to help maintain a healthy diet are included at the end of this blog post.
Duchenne and Diabetes – Our Story
It was having both Duchenne and type 1 diabetes that got Dylan. His heart function had dropped from 35% to 18% in less than a year. He began experiencing heart palpitations, feeling nauseous, not eating well, and had serious trouble controlling his blood sugar levels. The night we brought him to the hospital, he had been throwing up a lot and his sugars kept dropping unlike ever before. We didn’t know exactly how bad his condition was, but we knew what he was experiencing that night was different than anything he’d gone through before. We knew whatever was causing this to happen was something very serious.
We rushed Dylan to The Hospital for Sick Children in Toronto. The medical staff tending to him couldn’t even get a blood pressure when we arrived in the emergency room. Then, all of a sudden, he was moved into a room where about 20 hospital staff hurried in to help him. I felt like I was living a nightmare. My poor son was being taken from me by a dreadful combination of two horrible diseases.
A team of endocrinologists came to address diabetes-related issues. They were quickly followed by a team of cardiac specialists. There were so many complications and specialists that needed to provide him care that the hospital staff didn’t even know what area to put him in. Eventually, he was moved to a room in the ICU.
I left Dylan to go to a nearby room for a chat with a nice man from palliative care. When I returned, the IV’s had been removed and all the machines had been turned off. It just wasn’t working anymore. There was nothing they could do. Dylan looked at me and begged me, “No more needles, Mom, please!” I replied, “Okay, Dylan. Okay, I promise.” I told the hospital staff I wanted to take him home and that’s exactly what I did. He went through so much while he was at the hospital. I just had to take him home and respect his wish.
After we got home, Dylan said to me, “Mom, tomorrow I will be better and we will go out and do something, okay?” My heart shattered. That night was terribly rough. Dylan eventually fell asleep, but he wouldn’t ever wake up again. He went peacefully while thinking about things he wanted to do after he was feeling better. My baby boy passed away that evening. As Dylan took his last breath, he opened his eyes and looked straight up at me. It was and always will be the worst day of my life.
Helpful Resources for Additional Information About Nutrition