Chiari Malformation With Syringomyelia: Understanding The Condition September is Chiari Malformation Awareness Month – a time to highlight a rare but serious neurological condition that affects the brain and spinal cord. My Chiari Story It was December 2022, and I was sitting in a booth
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…I was born with a rare condition called, Alagille Syndrome, and for me it affects my liver, my heart, my bones, vision, hearing, learning pace and more. I’ve had a liver transplant – almost 20 years ago. In March 2026, it will be Oliver’s 20th anniversary. I’m legally blind and have
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Life can be painful. But what if some of that pain isn’t punishment (In fact, since Jesus died on the cross for humannity, and resurrected in three days, He does not punish us by inflicting pain.)… but surgery? Just like a surgeon carefully cuts to
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Thank you Ps Paul McInstosh for sharing and quoting from Alagille Girl during your sermon. Timestamps: 51:32, 1:01:45, 1:07:41, 1:20:38
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A person’s sick body reflects what humanity is like spiritually. In my book, Alagille Girl, I dedicated a chapter listing all my medical conditions – past and present. Today, I want to give an updated and brief list of my chronic illnesses and disabilities. Past
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As a liver transplant recipient nearing 20 years post-surgery, DonateLife Week resonates with me. This annual campaign – from Sunday 27 July to Sunday 3 August in 2025 – encourages all Australians to reflect on organ and tissue donation and continue the life-saving legacy of
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This National Diabetes Week (13-19 July 2025), I want to shine a light on a condition that’s personal to me, and that is, diabetes. As someone who has experience with drug-induced diabetes, which involves monitoring my blood sugar levels with a continuous glucose monitor (CGM)
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Anyone with chronic illness or disability should be able to see themselves reflected in the world around them. This week, Mattel unveiled a brand new addition to its Barbie range: the first-ever doll representing Type 1 diabetes. This doll isn’t just a toy; it’s raising
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The reality of sight and the reality of blindness. I never thought one could be in two realms when it comes to vision. It’s been almost four years since I was told I’m legally blind. And I’m still trying to figure out how to live
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Laughter Isn’t Just Fun – It’s Freedom “Laughter is the best medicine.” You’ve heard it before. But for those living with long-term illness, or disability, laughter becomes more than a punch-line. I first learned to laugh at my sickness and disability in my late 20s,
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