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Home > Knowledge & support > Resource hub > Anastasia Bukhman: turning lived experience into action
“Type 1 diabetes (T1D) has been part of our family’s life for quite a long time. We first encountered it through our parents, and later our daughter Sonya was diagnosed when she was very young. That experience changed the way we understood the condition, because it suddenly became something we were living with every single day. It gave us a much deeper appreciation of the realities and challenges that families face when managing type 1.
Having a child with the condition is a completely different experience. It’s very hard to explain to a three year old why she needs constant blood checks and insulin injections, why she cannot always eat when she wants, or what she wants. You are constantly trying to guess how she feels, and many nights you barely sleep because you worry something might happen.
Sonya’s diagnosis was an incredibly overwhelming moment. Your first thought, of course, is for your child: their wellbeing and their health. You want them to live as normal and as full a life as possible.
But as parents it is also extremely hard. At the beginning you question everything. You blame yourself, you get angry with yourself for every high or low. We felt like we had to be perfect all the time, constantly trying to control something that is actually very difficult to control.
Many parents will agree that having a child with T1D can sometimes feel even harder than having it yourself. You carry the responsibility, the worry, and the fear, while trying to stay calm and strong for your child and still give them a normal childhood.
The type 1 community is extraordinary. From the beginning, we found a huge amount of strength and support within it. Some of that support is very practical: families sharing experiences about devices, treatments, what works well and what doesn’t. But there is also something equally important on the emotional side: the reassurance of knowing that you’re not alone.
We’ve also been struck by the community of clinicians and researchers working in type 1 diabetes. There is a very strong sense that everyone is working toward the same goal, improving lives today while pushing toward better treatments and, ultimately, a cure.
We believe that if you are fortunate enough to be in a position to help, you should. Supporting causes that matter is part of living in a society.
Of course, type 1 is also very close to our hearts, and it is an area where we feel we can genuinely help push progress forward.
At the same time, the scientific advances we are seeing right now are incredibly encouraging. It feels as though we may be approaching a moment when real breakthroughs become possible, and that makes it an especially important time to support research.
There are honestly too many exciting areas of research to list. But one development that feels particularly important is the ability to screen people through simple blood tests and identify those who are at risk of developing type 1 diabetes. That represents a huge step forward.
At the same time, therapies designed to delay the onset of the disease, as well as innovations such as beta-cell transplantation, give real cause for hope.
More broadly, it’s also important to recognise that breakthroughs often come from unexpected places. That’s why supporting multidisciplinary research is so important, it allows new ideas and approaches to emerge from different fields.
Living with type 1 diabetes affects far more than just the medical side of life. It touches everyday routines, family dynamics, mental health, and emotional wellbeing. Having a strong community where people can share experiences, advice, and encouragement can make an enormous difference.
Breakthrough T1D UK does an extraordinary job of supporting and connecting that community, and we’re very proud to be able to contribute to that work.
Ultimately, everything we do is for the community, because we all hope for a future where T1D no longer defines the lives of those living with it or the families who support them.
The ultimate hope is a cure, a moment when type 1 no longer exists and people simply don’t have it anymore. When life is no longer controlled by constant monitoring, injections, and endless daily decisions.
But even along the way to that goal, there are many advances that could dramatically improve people’s lives: earlier detection, treatments that delay the onset of the disease, and technologies that reduce the daily burden of managing it.
It can feel incredibly overwhelming at first, but it’s important to remember that you are not alone. There is a whole community of people who understand what you’re going through and who want to help, both locally and online.
Over time, you begin to learn the routines, gain confidence in the decisions you need to make, and find your own rhythm as a family. And perhaps most importantly, you realise that people living with type 1 diabetes can still live full, active, and joyful lives.”
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Hear from Anastasia Bukhman, one of the founders of the Bukhman Foundation, on her family’s journey with T1D and turning her lived experience into action.
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Our research is improving the lives of people with type 1 and making strides towards a cure. We’ll keep pushing until we make type 1 diabetes a thing of the past.
