Talking Type 1: Barb Duster Friedhoff

Think type 1 diabetes is just for kids? Think again.

Because it was thought to only strike children and teens, type 1 was known as juvenile diabetes for a long time. The truth is a growing number of adults are being diagnosed with it in their 20s, 30s, 40s and beyond.

All week long, we will present stories from adults who were diagnosed with type 1 diabetes, describing the emotions and frustrations that came with their experiences. Each person defines success in different ways, but they all celebrate the triumphs that have helped them reach their goal of living well with diabetes.

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Barb and her son Matt

Barb and her son Matt

Name: Barb Duster Friedhoff
Age: 53 (diagnosed at age 45)
Location: Wooster, Ohio

It was 2005. I was 45 years old, happily married with two boys, ages 9 and 7.

One day I noticed my eyesight had changed (I couldn’t see well across the room). I went to the optician, who said I had an eye infection and prescribed drops. Knowing that eye complications are associated with diabetes, I mentioned that my mother was diagnosed with type 1 at the age of 45. “You’re not diabetic,” he said.

My eyesight got worse. He referred me to an ophthalmologist, who also said it was an infection and prescribed stronger drops. Meanwhile, I was losing weight like crazy (I went from a size 8 to a 4) and drinking water nonstop. But the ophthalmologist said those were side effects of the drops. I mentioned my family history, and he too said, “You’re not diabetic!” Of course, I wanted to believe him.

Eyesight continues to get worse. Incredible thirst continues. I remember carrying eyeglasses (which I hadn’t worn since having laser surgery in 2000) and a water bottle with me everywhere. I developed a raging sore throat. I made an appointment with my internist and asked her to do a strep test culture and a blood glucose test (I knew I had all the symptoms of type 1). She said I didn’t have diabetes but agreed to run the test.

Turns out, my A1C was over 14 percent, and I had a throat infection on top of the eye infection. I was called to come back in immediately. Against my protests, they treated me as having type 2 diabetes. They said that, given my age, it was the only possible diagnosis. When the pills and diet did nothing to alter my high blood glucose levels, I made an appointment with an endocrinologist. He ran the tests that definitively identified me as having type 1 diabetes.

I had to go back to the ophthalmologist to make sure my eyesight was improving with insulin therapy and to the internist for my throat infection. Neither doctor apologized for—or even acknowledged—overlooking the classic symptoms of type 1 diabetes.

I am one of 12 children and the only one of my siblings to develop type 1 diabetes (so far, anyway; the youngest of the bunch is 40). There are several relatives on my mother’s side who also live with type 1, and I have 31 nieces and nephews ranging in age from 10 to 38, plus 13 great-nieces and nephews who I hope are spared that diagnosis. My mother died of pancreatic cancer at the age of 69, and I pray that having mirrored her diabetes diagnosis at the age of 45 does not mean that I am destined to follow her path. Only time will tell. (Click here to learn more about the genetics of diabetes.)

And there’s more to our story. Our oldest son, Matt, was diagnosed with type 1 diabetes when he was 10 years old. He was not symptomatic, but he and his younger brother requested a random blood glucose test and Matt’s result was 256 mg/dl. Several of his blood glucose tests over the next few days were more than slightly elevated—in the 200s and 300s. I felt sure that he, too, had diabetes.

At our appointment with the pediatrician, Matt had a slightly elevated A1C, and at first the doctor said it was probably just due to hormones. He thought I was crazy for jumping to the conclusion of type 1 diabetes. After going to my endocrinologist for advice and getting Matt a glucose tolerance test, I was, unfortunately, proven right. He is 17 now.

My son and I are now dedicated to passing on information about the symptoms and care of type 1 diabetes and annually raising funds to find a cure!

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2 Responses to Talking Type 1: Barb Duster Friedhoff

  1. Mary Parker says:

    Well-written and very informative article, Barb! Thank you so much for educating many people about diabetes, including our family. Your sister, Mary

  2. Elgean Vogler says:

    This just goes to show that one should believe in what your body tells you. I too found this a super article and very informative. I also loved the picture of you, Barb, with your son. Looks like you just got shorter. He’s at that age when he just suddenly grows taller and taller. I remember the feeling well. Good luck to both of you in controlling this disease

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