Amber Condell likes stories - both hearing them and telling them. That’s why she likes studying genetics.
In Amber’s own story, genetics is right there in the beginning.
“When I was born, I was diagnosed with Ehlers-Danlos Syndrome,” she says. “Growing up with a genetic condition, and learning to manage it, means genetics has always been a really big part of my life, from the earliest starting point I can remember.
“It’s a heritable disorder, so my dad also has it, my sister has it, my mum does not. From a young age, that always really interested me, how patterns of inheritance work.”
Where most people might learn about the science of genetics from a textbook, for Amber, it’s never been separable from her lived experience of it.
“Ehlers-Danlos Syndrome involves a lot of skin fragility, and dislocations, and really easy bruising. So growing up, especially in my teenage years, I was frustrated about watching everyone else around me go to school camps and participate in sport activities, while I was stuck. I couldn’t put my health at risk to do a massive hike, for example, and dislocate something.
“While this was happening emotionally, I got really interested in the genetic side of things from a molecular perspective: how genes work, how genes encode proteins, how that impacts people.”
The turning point in Amber’s story came, she says, when her family attended an Ehlers-Danlos Syndrome convention, where the psychosocial and the scientific perspectives on genetics coalesced for her.
“There were a lot of scientists there and I got to sit in on some talks. I was an emo sort of teenager at the time, hopping into this little room full of scientists.
“I was just super excited to hear them speak about genes, and upcoming research, and what kind of treatments they had, and also support networks and that kind of stuff. It just fascinated me a lot.
“I also got to meet other kids like me, who had similar experiences, but at varying levels. In terms of genetics, it's a very heterogeneous disorder, so you can have some people who have the same condition but a different mutation, or are a lot more severely affected than others.
“Just being in that room and meeting so many people, it reinforced that it's okay to be who you are, to own it and be proud no matter how frustrating it gets.
“That really hooked me on the emotional side of genetics. I just wanted to learn more about other conditions, other genes and how other people are affected by them.”
