Talking about Rare Disease Day and KBG with Chloe Haidenhofer who is sharing her lived experience.
This Friday, 28 February, is Rare Disease Day. You may be like many people who have never heard of this day, and if you haven’t, it’s likely that you don’t suffer from a rare, and often debilitating illness. Rare Disease Day is an opportunity to raise awareness of the myriad of illnesses that people around the world suffer from, and often for a really long time before they are diagnosed. And more than that, many diseases don’t have a cure and can only be managed with medications and/or therapies.
One of our employees, Chloe Haidenhofer, who has been attending the Alex Hills L&L for about 6 years and working in the Support Centre as an Admin Assistant for the Finance team for about 5 years and also for the Communications and Engagement team since 2023, has a rare disease and wanted to use this opportunity to share a bit about what that means to her and her family.
Chloe was diagnosed when she was 20 with KBG Syndrome, named in recognition of the surnames of the three people who discovered it. Common characteristics that people with KBG have include unusual facial features, skeletal abnormalities, and intellectual disability. Interestingly, most people with KBG will also be a little ‘neurospicy’, with autism, ADHD, and even anxiety. Chloe said:
It is important to me that people know about it, because it is a rare disease and not many people have it. Only about 600 people in Australia, not many doctors know about it.
Anyone who knows Chloe, knows that she has a very generous heart and for Rare Disease Day, she will be holding a store in Pod 3 at the Support Centre to raise money for KBG. Chloe is really creative and has made some lovely things to sell for the cause.
When asked why she wants to raise money for KBG, Chloe said:
I wanted to do this KBG fundraising event to help raise money for it because, not many doctors know about it and I would like doctors to know about it so they can help people.
Chloe says that while she has not met anyone with KBG, her Mum has been able to join the KBG Foundation Group on Facebook, where they have been able to connect to the community and share experiences and things that can help others.
Chloe says that the hardest part of having KBG is when you want to have children.
Knowing that there is a 50% chance that your children will have KBG is hard. It’s also really tough going to hospital all the time with stomach problems. It impacts a lot, even going on holidays as excitement can lead to more problems that could end up with me in hospital.
It’s awesome to see how Chloe remains positive and even when things are tough, she is still there for others.
Chloe understands that not everyone is able to get to the Support Centre for her stall, but if anyone would like to make a donation to KBG, you can do so on the link below.
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