Based on an interview with Bella (Queensland, February 2026).

Six years ago, we first spoke with Bella about her experience living with Tuberous Sclerosis Complex (TSC) and her journey with sirolimus treatment. Bella is now 36 and continues to live in Queensland. 

 Bella is still taking sirolimus. Her dose has gradually increased since 2020 but she feels that her health has been more stable over that time, including her tumours and kidney function. Her lung function can fluctuate day-to-day, but she feels it is generally much better. Although she still remains careful about hygiene, Bella is now less worried about being prone to infections. She contracted COVID-19 in 2022 and was worried about how it might affect her lungs. She was relieved that it was not severe and there seem to be no lasting impacts. Migraines, which she has experienced for several years, persist intermittently, though she says they are not as frequent as before.

Bella works in insurance customer service and has found her workplace to be inclusive and supportive. One challenge she has encountered is that because she, “looks able-bodied and OK,” other people may sometimes not fully understand the impact of her TSC, particularly her lung condition, which can cause shortness of breath and hoarseness, even when just climbing a flight of stairs. “For me, it’s largely an invisible illness,” she reflects. 

She describes having the chance to share her story through her workplace’s inclusion and diversity group as cathartic. “It felt good to say that these are the things I struggle with but they don’t stop me from trying to have a fulfilling life.” Bella remains deeply passionate about education and awareness, particularly around lymphangioleiomyomatosis (LAM) and the less visible aspects of TSC. 

Attending a TSA event in Melbourne two years ago was a turning point for her. “It was incredible talking to people who actually knew what it was like to live with TSC and LAM,” she says. Seeing other people navigating similar challenges helped her with something she continues to strive towards: accepting that TSC is a lifelong part of her story and learning to live alongside it.

Alongside managing the physical aspects of TSC, Bella has also developed a deeper understanding of her neurodiversity. She was formally diagnosed with autism by a clinical psychologist and has been taking medication for ADHD since 2019, which she says has been helpful. She received support from both a psychiatrist and psychologist, and has completed Dialectical Behaviour Therapy (DBT) to strengthen her emotional regulation. Going for walks, maintaining balance in her life, and pursuing creative outlets like art all play an important role in sustaining her mental wellbeing. She admits, “some days are better than others.”

And, she is still lifting. In late 2020, Bella won a local Strongwoman competition which she says was an incredibly fulfilling experience. Since then, she has continued her journey with bodybuilding and powerlifting, and has participated in novice powerlifting competitions as well as a bodybuilding competition. Strength training, she says, has been transformative for both her physical and mental health. 

Bella’s message to others living with TSC is clear: “It shouldn’t prevent you from becoming who you want to be. People are affected in different ways, but don’t let it stop you from doing things you’re passionate about. I thought it was the end of the world for ages, but it’s not.”

She pauses, then adds: “Even if you feel different, it’s not a bad thing. It can actually be really cool. Be yourself. There’s a really good community around to support you; just find your limits and work within them.”