Real-life stories from people living with autoimmune T1D

Meet Aïcha 

Aïcha, a 53-year-old mother of three teenagers, was diagnosed with autoimmune T1D in her late 40s. The condition was not unfamiliar to her, as her sister had been diagnosed with it many years earlier at age 12. Aïcha's journey with autoimmune T1D continued with her twin boys also having the condition, while her daughter, thankfully, screened negative, offering some much-needed relief. 

It’s important to recognise that people, like Aïcha, who have a first-degree relative with autoimmune T1D, have up to 15x higher risk of developing the condition compared to the general population.⁴ Proactively screening for autoimmune T1D in those with a known family history of the condition allows you to detect it before symptoms arise.*^5–7 

Meet Korey 

A licensed clinical psychologist and part of the diabetes care team at Stanford University, Korey lives with autoimmune T1D, alongside coeliac disease and an autoimmune thyroid condition. His diagnoses have resulted in dietary restrictions that can make social gatherings tricky. Familiar with the lifestyle adaptations needed for life with autoimmune T1D, Korey is a keen advocate for screening and has already had his eldest tested for the condition.

People like Korey demonstrate the high degree of co-occurrence between autoimmune T1D and other autoimmune conditions. Of those living with autoimmune T1D, up to 9% also have coeliac disease, and up to 30% also have autoimmune thyroid conditions.^8,9 Understanding the genetic link between certain autoimmune conditions can help you identify which patients to screen as a priority. 

Meet Alizée 

Meet Alizée, a 30-year-old woman living with autoimmune T1D. With no family history of the condition and no other risk factors, her diagnosis at 19 years old came unexpectedly. 

Although people with a family history of autoimmune T1D are at a significantly higher risk of developing the condition, the majority (~90%) of new diagnoses occur in people like Alizée, who have no family history of the condition.^†4,10 So, while some risk factors may position some individuals as higher priority screening candidates, it’s important to understand that everyone has the opportunity to get ahead of autoimmune T1D through universal screening.  

Meet Veerle 

Veerle is 34 years old and was diagnosed with autoimmune T1D after an initial misdiagnosis of type 2 diabetes. She was the first in her family to be diagnosed with autoimmune T1D but has distant cousins who have since been diagnosed too. 

In a retrospective US study, ~40% of adults with autoimmune T1D were initially misdiagnosed with another condition, with 77% of these cases being misdiagnosed as type 2 diabetes.^‡11 Misdiagnosis can delay proper insulin replacement therapy, resulting in prolonged hyperglycaemia and increasing the risk of diabetic ketoacidosis (DKA).¹¹ This underpins the importance of considering autoimmune T1D in certain individuals suspected as presenting with type 2 diabetes. 

Healthcare professionals like you, who understand the importance of proactive screening, can transform the lives of those with autoimmune T1D. By detecting the condition before symptoms appear, you can help protect more people from the potential dangers of a later diagnosis.^5–7,12,13 

While people from all backgrounds can develop autoimmune T1D, regardless of age or family history, ^10,16 being vigilant about the risk factors can help you identify which patients should be prioritised for screening.^1,8,9 

GET 1 STEP AHEAD OF AUTOIMMUNE T1D THROUGH SCREENING.  

Abbreviations 

DKA, diabetic ketoacidosis; T1D, type 1 diabetes 

Footnotes 

*The T1D index is a data simulation tool designed to measure and map the human and public health impact of autoimmune T1D.^14,15 

†In a population-based observational study of 57,371 young individuals with autoimmune T1D across Germany, Austria, Switzerland and Luxembourg (using data from the Diabetes Prospective Follow-up Registry between 1995 and 2018), 53,606 (93.4%) had no family history of autoimmune T1D.¹⁰ 

‡In a retrospective online survey of patients with autoimmune T1D and caregivers of patients with autoimmune T1D in the US, a diagnosis of autoimmune T1D was missed in 38.6% of those diagnosed at ≥18 years of age. Of those patients, 76.8% were initially diagnosed with type 2 diabetes.¹¹ 

References 

1. DiMeglio LA, Evans-Molina C and Oram RA. Lancet. 2018;391(10138):2449-2462. 
2. Insel RA, Dunne JL, Atkinson MA, et al. Diabetes Care. 2015;38(10):1964-1974.  
3. Ospelt E, Hardison H, Rioles N, et al. Clin Diabetes. 2024;42(1):17-26. 
4. Besser REJ, Bell KJ, Couper JJ, et al. Pediatr Diabetes. 2022;23(8):1175-1187. 
5. Narendran P. Diabetologia. 2019;62(1):24-27. 
6. Raab J, Haupt F, Scholz M, et al. BMJ Open. 2016;6(5):e011144. 
7. Sims EK, Besser REJ, Dayan C, et al. Diabetes. 2022;71(4):610-623. 
8. Barker JM. J Clin Endocrinol Metab. 2006;91(4):1210-1217. 
9. Głowińska-Olszewska B, Szabłowski M, Panas P, et al. Front Endocrinol (Lausanne). 2020;11:476.  
10. Karges B, Prinz N, Placzek K, et al. Diabetes Care. 2021;44(5):1116-1124. 
11. Muñoz C, Floreen A, Garey C, et al. Clin Diabetes. 2019;37(3):276-281. 
12. Wolfsdorf JI, Glaser N, Agus M, et al. Pediatr Diabetes. 2018;19 Suppl 27:155-177. 
13. Besser REJ, Ng SM, Gregory JW, et al. Arch Dis Child. 2022;107(9):790-795. 
14. Type 1 Diabetes Index. T1D Index Factsheet: GLOBAL. Accessed August 5, 2024. https://t1dindex.shinyapps.io/dashboard/ 
15. Type 1 Diabetes Index. A campaign guide to launch the T1D Index. Accessed August 5, 2024. https://www.t1dindex.org/wpcontent/uploads/2022/09/Campaign-Guide.pptx-2.pdf 
16. Gregory GA, Robinson TIG, Linklater SE, et al. Lancet Diabetes Endocrinol. 2022;10(10):741-760.