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Advice for people with diabetes and their families

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Susie's story: volunteering to find alternative ways to treat diabetes

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Susie Marques

Susie's daughters diagnosed in 2015 and 2016.

Research is so crucial to help understand why and how type 1 diabetes happens and to get to the point where we can prevent it.

Susie has five children, with both her daughters living with type 1 diabetes. Susie volunteers as a patient advisor for an immunotherapy clinical trial, called USETKID. It’s testing if a drug can retrain the immune system and halt its attack in children who’ve just been diagnosed with type 1 diabetes.

Journey with diabetes

Susie's experience with type 1 diabetes

  • Her eldest daughter was diagnosed in 2015 when she was eight years old
  • Her youngest daughter was diagnosed age six in 2016, which was picked up from TrialNet, a research network that screens family members of people with type 1 diabetes
  • Susie volunteers as a patient advisor for an immunotherapy clinical trial, called USETKID. It's testing if a drug can retrain the immune system and halt its attack in children who've just been diagnosed with Type 1 diabetes.

     

My family and type 1 diabetes 

After Neve was diagnosed we were invited to take part in TrialNet, a research network that screens family members of people with type 1 diabetes to pick up their risk. They checked my other children to see if they had signs in their immune system, called autoantibodies, which means they’ve got an increased chance of getting Type 1.

We found out Saffron, my younger daughter, was positive for autoantibodies and her Type 1 was picked up early because of TrialNet. Her diagnosis was much easier, we knew it was coming and by the time she was diagnosed we were pros. We’d gone low carb and she was much more stable because we’d already figured a lot of things out.

My three boys are still tested annually through TrialNet and they’re negative for autoantibodies. It gives us peace of mind to know that each year.

Volunteering

Getting involved with immunotherapy research

I saw an advert to get involved in helping the DRUC on their Patient Reference Panel with research applications, lending my opinion as someone with that real life experience of diabetes. Through that I heard about the USTEKID trial and became a Patient and Public Involvement volunteer for them.

I go to meetings with the researchers and trial managers and use my unique perspective to advise them about what a parent or child taking part in the trial would need to know, or any challenges that could arise.

Research is so crucial to help understand why and how type 1 diabetes happens and to get to the point where we can prevent it. It was a no brainer to get involved. I wanted to help my daughters and everyone else with type 1.

Treatments

Susie's perspective

It was wonderful when we got insulin 100 years ago. But it all seems to have stagnated in-between then and today. There hasn’t been anything else.

I’d encourage anyone to get involved in research in any way you can. You feel like you’re useful and you’re at the forefront – you can see what’s in the pipeline. And I’ve learnt a lot about all types of diabetes through doing this.

 

Find out more about immunotherapies here.

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