Kirsten’s story: Raising awareness for 22q this November
November marks 22q Awareness Month. Read more from Kirsten, Yooralla’s brilliant receptionist at our Head Office and someone living with 22q.
November marks 22q Awareness Month, a time to celebrate, raise awareness, and support people with 22q11.2 Deletion or Duplication Syndrome (22q). This chromosomal condition, which affects 1 in 4,000 people, can impact development, behaviour, and health in various ways. Despite being the second most common chromosomal syndrome after Down syndrome, 22q remains largely under-recognised.
For Kirsten, Yooralla’s brilliant receptionist at our Head Office and someone living with 22q, this month is a time to reflect, share their experiences and help others better understand this condition.
Recently, Kirsten attended their first 22q Foundation event to celebrate their 30th anniversary. “They are the only known organisation supporting people with 22q in Australia,” they shared.
Image descriptions
Image one: portrait image of Kirsten. They are wearing silver earrings and a necklace. They are standing in-front of a media wall with '22q Foundation Australia and New Zealand' logos.
Image two: group of eight people standing together, smiling. They are all wearing formal wear. They are standing in-front of a media wall with '22q Foundation Australia and New Zealand' logos.
Kirsten’s story
Kirsten shared that they were diagnosed with 22q in 2001. “I was nonverbal until I was three years old and had help from a speech pathologist with pronouncing words,” they said. “Fun fact,” they added, “I still can’t pronounce ‘th’!”
Kirsten explains that 22q can be a hidden disability, with challenges that aren’t always visible. “I personally have a different processing speed compared to others and prefer written communication over verbal. It’s something people don’t always think about, but it makes a big difference.”
Outside of work, Kirsten enjoys spending time with family and has a love for photography, op shopping and nature. Kirsten is also proud of completing a Bachelor of Library and Information Management, which they shares is a degree that “surprises everyone!”
“I’m also proud of achieving stable employment at Yooralla,” Kirsten said. “It’s a workplace that appreciates lived experience and knows we can achieve great things.”
Busting misconceptions about 22q
Kirsten believes more research and resources are needed for adults with 22q. “Most organisations hold events for younger children. It would be great to see more information from others my age,” they explained.
Kirsten also highlighted gaps in healthcare. “There may be a link between 22q, ADHD, and autism, but it’s not always recognised,” they said. This can create challenges in accessing the right support.
Why awareness matters
“22q Awareness month is important to me because I have had challenges finding secure employment due to asking for accommodations to keep performing exceedingly,” Kirsten shared. “Raising awareness can help with research and specialised clinics work in helping children with 22q.”
Kirsten also hopes greater awareness will inspire workplaces to adopt small but meaningful adjustments that help all staff thrive. “Simple things, like providing written instructions or sensory aids, can help with sensory overload—not just for people with 22q but for anyone who’s neurodiverse,” they said.
Supporting 22q Awareness
This November, let’s challenge misconceptions, celebrate the strengths and diversity of people living with 22q and commit to creating a more inclusive and understanding world.
You can learn more about 22q or support the 22q Foundation Australia and New Zealand by visiting www.22q.org.au.