In 2015, I was blessed with a beautiful, healthy baby girl, but I couldn’t help but worry – will she have to go through what I have?
In my 35 years, I’ve been diagnosed and lived with three separate autoimmune conditions, including type 1 diabetes.
My complicated health journey began when I was diagnosed with hypothyroidism (under active thyroid) at three-years-old. The condition triggered type 1 diabetes, which fully developed by age four. Most recently, I was diagnosed with Pernicious Anaemia (the inability to absorb vitamin B12), which resulted in an emergency double blood transfusion.
Living with type 1 diabetes has been like a roller coaster ride – just trying to keep it under control can be quite consuming. From age four, every day revolved around the daily injections required to keep me functioning.
I know that because of my condition, my daughter, Leila, is 15 more times likely to develop type 1 diabetes and its complications.
After all that I’ve been through, I didn’t wish the same path for her, so I decided to ask my endocrinologist about our options.
He introduced us to the ENDIA study (the largest diabetes observational clinical trial in Australia with now 1000 participants enrolled). The trial is aiming to find out what causes type 1 diabetes to find ways to prevent it. He told us that Leila would be closely monitored by experts in their field, free of charge, in a supportive and positive environment.
What he didn’t tell us was that being part of this trial would not only change our lives but also provide us with new friendships and an amazing support network.
We enrolled Leila in the trial when she was just three-months-old and we haven’t looked back.
We knew that late detection of type 1 diabetes could lead to life threatening complications, so I now have complete peace of mind knowing that if anything happens, it will be caught early.
The doctors and nurses of the ENDIA study have been great. They suggested that because I have three autoimmune conditions they can test and monitor Leila for all three. It’s so comforting knowing that they take Leila and her health so seriously and provide extra support outside of the trial.
Three years in and our experience continues to be positive. Leila loves her appointments; as an independent threenager she even took her own oral swab at her last one.
She’s really bonded with the nurses and doctors. The nurses do what they can to make it all less daunting – playing, blowing bubbles, and making sure our visits happen in a fun environment. Our nurse also has type 1 diabetes, so she’s been a great support for all of us and has a real understanding of where we are coming from.
On top of the numerous benefits to our family, it feels great to contribute to something that could help to find a cause of diabetes type 1 and prevent other children from going through what I did growing up. Being in this trial not only helps my daughter’s future, but our future generations as well.
The trial is set to run until Leila is 10-years-old. As a mum, there’s nothing more important than your kids health and wellbeing, and having the opportunity to participate in this has given me the greatest gift – my daughter’s continued good health.
It’s surprising to know that there are more than 1000 clinical trials recruiting at the moment. Depending on the type of trial, young people, older people, healthy participants, or people with particular medical conditions might be able to participate.
Being part of one has certainly opened my eyes to the fact that they play such an important role in advancing healthcare in Australia and across the world.
So many of the medical breakthroughs that Australians are now benefiting from – like the HPV and cervical cancer vaccine, and the cochlear hearing implant – have come about because of clinical trials.
Through our journey, we’ve learnt that there are plenty of benefits to healthy participants like Leila, who are not only helping themselves, but ensuring that future generations have access to the best and safest treatments available.
A good first step if you are interested in exploring the possibilities of participating in a clinical trial is to visit https://www.australianclinicaltrials.gov.au/ or to speak to your GP or other trusted health practitioner, just like I did.