Challenges in Diagnosing Type 1 Diabetes

Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES: Hello and thank you for joining this MEDcast^® presentation titled “Embracing Research and Finding Support to Manage Type one Diabetes.” I am Diana Isaacs and Endocrine Clinical Pharmacy Specialist and the continuous Glucose Monitoring Program coordinator at the Cleveland Clinic Diabetes Center in Cleveland, Ohio.

Natalie Bellini, DNP, FNP-BC: And I am Natalie Bellini. I'm a nurse practitioner specializing in diabetes management with the R and B Medical Group in Williamsville, New York.

Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES: And joining us today is Sumita Singh, whose daughter Bella was diagnosed with type one diabetes at age 13 in 2020 and is currently enrolled in a clinical trial for a type one diabetes therapy. Today we will discuss their family's journey as they navigated the challenges of Bella's diagnosis and embraced research to find a treatment for type one diabetes. We are excited to have her with us today.

Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES: Can you tell us a little bit about Bella, and do you have a family history of type one diabetes?

Sumita Singh: We don't have any history of family diabetes. Bella is now 15. She was diagnosed when she was 13, so it's been an interesting 2 years for us. But she's a cool kid. She's now a sophomore in high school. She goes to a competitive school, we call them Magnet High Schools in the county that I live in and has chosen to pursue law injustice because she's all about community and giving back and somehow likes space and science. If there is a role for space and science and law Bella's probably right in the middle of it.

Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES:That's awesome.

Natalie Bellini, DNP, FNP-BC: Wow. What an incredible child. Can you talk to us about her journey in getting diagnosed with type one? What happened? Were you aware of the signs? Did you know anything at all? Tell us your story.

Sumita Singh: That’s a great question and it's a tough one to answer because I wish I had known parents and maybe doctors and caregivers. My husband and I both have advanced degrees. We, work and understand what's happening latest in science. At the time when Bella was diagnosed, I worked for one of the world's largest scientific publishers. I have a lot of regret that I did not, know early enough. And the reason is there's no education on type one diabetes. It's not something that pediatricians talk about, and I wish they did. Our journey began in the fall of 2019. There's a lot that's happened in the last 2 years. Bella was in eighth grade. She had all the symptoms. Now that I look back, she was a poster child of a kid going through the symptoms of diabetes. She frequent urination, dehydration, losing weight. I was making her, 4 or 5 meals. I was constantly feeding her, but she was not keeping up. It was in January of 2020; she fell asleep in her science class. That's what happened. And she didn't fall asleep. She had no energy. And there were all these, foot cramps. Once she had a cramp on our driveway and my younger daughter went to get her. We had all the signs and then when she fell asleep or basically had fatigued, tremendous fatigue in her science class, her science teacher, believe it or not called the nurse. The nurse called us, and we scrambled. And between that day and the date she was admitted in pediatric ICU, it was about 5 days, less than that. A rapid response from us. I will point out one thing. We have a family history of hypothyroidism, so I have it, my sister, my mother there is a Hashimoto, so there's an autoimmune tendency if you like, and particularly in my demographic in the South Asian community, there's a tendency to have these kinds of autoimmune conditions. Bella had an endocrinologist she had an endocrinologist since she was in 5th grade. What makes me a little bit angry and sad at the same time is we went to see the endocrinologist on January 13th, we mentioned all these symptoms about the weight loss and such. And I wish she did an A1C and maybe we could have been in the hospital 3 or 4 weeks before Bella didn't have to faint in class.

Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES: That's intense. I'm curious once you knew that she had type one diabetes, then how did you communicate that to Bella? What did you tell her?

Sumita Singh: What is the data? The majority of pediatric patients who get diagnosed with type one diabetes typically end up getting diagnosed because they are in in distress. Bella was already in distress; she had all the symptoms. I tell the story, sometimes we talk about it. Now we're in a different place as a family, but when my husband was out taking her for blood work. We had blood work from both the pediatrician and the endocrinologist. And I was in bed with my younger daughter and the dog, and I got a call from the endocrinologist saying, hey, we've got the results, you should go to the pediatric ICU in the nearby hospital and pack a bag. And she still didn't tell me what was going on. This was during COVID, only one parent could be in the hospital. Obviously, I met my husband, he stayed in the car, I went to the hospital, and he was on FaceTime. We learned together, at the same time. I did not have the opportunity to onboard, if you like, my daughter as I would've liked to. We coped with it. I stayed overnight in the hospital, and she was in bed, and I just stayed up the whole night researching. I went in from, we have a problem to now we need to solve it. We're a fix it kind of family. Immediately we found all these, friends and, people within our network who either had type one or knew someone who had type one, and just the community emerged. Within 2 days we had researched what kind of pump we wanted, what CGM we wanted. I have to say I didn't get the opportunity to onboard her and talk to her. We did that when we got home.

Natalie Bellini, DNP, FNP-BC: Wow.

Diana Isaacs, PharmD, BCPS, BCACP, BC-ADM, CDCES: That's a lot. I'm just thinking, you're really great to do all that. A lot of parents would, just have no idea about pumps and CGM and all of that.

Transcript Edited for Clarity