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Colorado Chiari Institute gives new life to fashion designer with rare brain condition

September is Chiari Awareness Month
September is Chiari Awareness Month 03:00

Sitting in a hospital chair, Hannah Jane is radiant, showing off her one-of-a-kind wearable artwork.

"I wore it today so I could represent me as a butterfly and that I came out of everything strong," Jane told CBS News Colorado's Mekialaya White, while displaying her shimmering jean jacket decal.

But this fashion designer is also a warrior, and it's no coincidence that she's telling her story inside the Colorado Chiari Institute at the Medical Center of Aurora.

Her journey with Chiari malformation, a rare brain condition in which brain tissue extends into the spinal canal, started back in 2018.

"I woke up with the spins, didn't know what was wrong with me and I was very confused. So, I actually went to the ER. They told me I had vertigo, gave me meds, sent me out the door," said Jane.

And she struggled; years went by, and she received no answers for numerous doctors.

"It was such a battle of being myself but not feeling like myself," she shared.

"(Patients experience) dizziness, balance issues, ringing in ears, sometimes swallowing difficulties, numbness," said neurosurgeon Dr. Colin Buchanan.

Jane felt all those things, and even documented her symptoms and began to share them on social media.

"I often experience extreme confusion and I have no idea where I'm at," she disclosed in one of her videos.

But thankfully, she found the Chiari Institute.

"It was a resource where I felt safe and heard," said Jane.

And with help from staff, she chose to have Chiari decompression surgery in June of 2022. It was life changing, virtually taking away the chronic pain.

"Even in my surgery decision, I was terrified. And they made me feel comfortable in the fact that I was scared," Jane said.

And in healing, a community rallied around her, in-person and online. She gained confidence in sharing pieces from her fashion line, the Art of Hannah Jane, and messages of hope.

"It kept my mind spirited even though my body didn't feel that way. My brand has been my expression through my journey," explained Jane.

She now has thousands of followers: people who, like her, understand the struggle, and triumph.

"You lose hope and I just kept fighting for myself. Never lose sight of who you are amidst your condition."

Jane is dedicated to sharing the stories of fellow Chiari warriors and encourages those who are struggling to find answers to reach out.

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