Darren has been involved with the website SteppingUp.ie which aims to make the transition for young people with chronic illnesses to adult health services easier. He talks about why he got involved and what life is like with a chronic illness.
Since the age of five I have suffered from the chronic illness that is Type 1 Diabetes. Type 1 Diabetes doesn’t get as much of the spotlight as Type 2 Diabetes, but the fact of the matter is Type 1 is an auto-immune disease that is significantly worse in comparison to the preventable Type 2. Type 1 sees sufferers having to inject daily doses of insulin up to 5 times a day, (and more if tight control is necessary), along with the maintenance of a good control of the blood sugars and monitoring their carbohydrate intake.
I won’t lie, I am no ‘perfect diabetic’, and I have struggled with the maintenance of a good HbA1c (3 month blood glucose average test) but I live trying to fix that. Diabetes has shaped my life, from what my favourite foods are to what I want my career to be. For example, in my selection of college course, Biotechnology, and in turn what my career would entail, my choices coincided with my liking of science from a young age and my diabetes. I am in my final year now and with my degree the door opens for many avenues to help diabetics. My dream job would definitely be in the field of research and development for new innovations to help people with diabetes or even insulin production.
As I am interested in research, I jumped at the opportunity to help out a research team at Trinity who were looking to hear about young people’s experience of transitioning between child and adult health services. The background of the research was the transition from child health services to adult health services which every young diabetic must make at the age of 17/18.
I went through this transition and was glad to give the account of my experience and thoughts on improving the transition experience. It was a great honour to work with the research team as any opinions or feedback, be they positive or negative, were taken on board.
I thought I was prepared for the transition; I was happy with the situation my diabetes was in and I had been well informed throughout the years in the child services. However, I was worried about the change of personnel as I had become so close with the doctors and nurses I had grown up with at my children’s clinic.
As nervous as I was, the transition was handled very well. My future adult clinic doctor and nurse came to my last appointment at the children’s clinic and ‘took the reins’ if you will. They performed all the regular tests i.e. weight, height, HbA1c.
My next appointment would be at the adult clinic and on my first day I was very nervous. It felt like my first day of school and in reality it wasn’t too different. I walked into the secretary’s office to meet a new face. I entered the waiting room to see I was by far the youngest person there; it was just all so different.
However, when I saw my nurse I was made feel very welcome and given an insight into how my new regime was going to work.
I still go to the same adult clinic six years on, I am on first name basis with everyone there and I am currently working hard to get my blood reading (HbA1c reading) to a satisfactory level that my doctors and I are happy with. People may not like change, but change can be good and this transition is made to suit your needs. If you have any concerns, it is important to speak up and be comfortable with your new diabetic management team.
Nerves and disliking change are normal feelings but I can’t stress enough that help is there now in the way of the website called: SteppingUp.ie. The website aims to help you get comfortable and remove the nerves of the transition. It can prepare you for the transition from the age of 14 and I would advise anyone reading this to pass the word on to any young people with a longterm illness to visit the website.
Put it to good use and make life easy for yourself by making the transition to adult health services happen the way you want.
SteppingUp.ie has transition information for young people with long-term illnesses who are moving to adult health services