I thought I was the minority – by Helen May
Like many, I always assumed that Type 1 Diabetes is most commonly diagnosed in children. So I was surprised to read in Simon O’Neil’s recent post that 57% of Type 1 diagnoses are made in people aged 20 and over.
For a start, I can no longer describe with delight how my youthful body got a childhood disease in its thirties. But, more seriously, I think some of the public messaging about Type 1 needs to change.
Firstly, there are the old names. Yes, I know they are old and, in most circles, they changed, but should there be a more concerted effort to banish the terms “Juvenile” and “Adult Onset” Diabetes? I have often thought the “juvenile” term is an odd name because it implies the condition goes away once you reach maturity. And I still get asked if I have “Adult Onset” (meaning Type 2) when I say I was diagnosed in my thirties.
Then there is the target audience for the 4Ts message. The Diabetes UK page describing the symptoms of Type 1 diabetes starts with “Too many children and young people…” But this only covers 43% of us type-1ers. What about adults who get these symptoms? I am sure we should not be ignored.
Which brings me on to my next point: education. Twelve years ago, I personally experienced the ignorance in the healthcare profession around diabetes. I was going to the toilet all the time, I was drinking a lot and I was very, very tired. When I went to the doctors, I was diagnosed with a Urinary Tract Infection and given antibiotics with no mention of diabetes until I went back two weeks later and told “diabetes is unlikely because you are not overweight, but let’s check, just in case”. I believe this recent research strengthens the need to educate healthcare professionals to recognise these symptoms in everyone regardless of age.
Finally, I believe more should be offered to support adults when they are diagnosed with Type 1. There seems to be a lot of supporting material for parents and teachers of children when they are diagnosed with diabetes to ensure they receive the treatment they deserve in the world outside healthcare: like at school. But I have seen little that explains what an adult needs to continue their life … the life they have lived for years without diabetes. Look at the number of people who did not know they needed a card to claim prescriptions for free (children do not need this card because, as children, all prescriptions are free). And I have read posts on diabetes forums from drivers who did not know they had to tell the DVLC that they are treating their condition with insulin. I would also add the need to check that any travel insurance covers diabetes. Travel, driving, prescription, … these are all things we did without diabetes but change once we are diagnosed with Type 1.
Is this research a wake up call to anyone associated with Type 1 to pay more attention to the majority of people diagnosed with Type 1 diabetes: the adults?