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Woman With Rare Genetic Disorder Shares Harrowing Story And Message Of Hope.

Kyla Greenhunt smiles as she sits in ehr wheelchair. Her hair is now purple. She's near water with a fountain and lots of trees. She looks happy and healthy.

Getting to the root of a health problem isn’t always as easy as going to a single or even a couple of doctor’s appointments. On the contrary, it can take countless appointments and years of trial and error to learn what is wrong. Kyla Greenhunt’s health journey went like this, and it started in 2020 with hip pain. It was thought that a single surgery would fix it, but when that proved to be incorrect, she received a life-changing diagnoses.

Kyla was diagnosed with Ehlers Danlos syndrome, a rare disorder that affects connective tissues. Soon after, she went into bladder failure, signaling that there was more wrong with her than they initially thought.

Kyla Greenhunt smiles as she leans on a walking cane. She's standing just a few steps away from the edge of what appears to be the grand canyon.

Soon, Kyla lost feeling and movement in her legs. Eventually, a hospital visit brought her new answers: She was diagnosed with tethered cord syndrome.

She underwent another surgery where she discovered that she had a complete spinal cord injury. This meant that she had to spend months in the hospital learning how to live in a new way. Soon after, it seemed as though things were finally looking up… but then she started to lose the ability to swallow food.

Kyla Greenhunt gives a thumbs up as she lays in a hospital bed. She's wearing a face mask so her face isn't fully visible. Text on the image reads "From there, I slowly lost feeling and movement in my legs and we had no clue why until..."

Soon after, she lost vein access from her frequent hospital stays. A port was placed but made her develop a blood infection. Once it was removed, a Hickman line took its place. Again, things started to look up —until she started to lose feeling and strength in her arms.

Kyla Greenhunt sits in a chair in rehab. She's wearing a face mask but looks hopeful. A medical professional, whose face is covered by a heart emoji, stands next to her.

Thankfully, Kyla managed to stay strong. She saw her neurosurgeon who was able to diagnose her with instability in the neck that was pinching her brain stem — the doctor fixed this by fusing her neck. And the result? Life changing.

Kyla Greenhunt smiles as she sits in ehr wheelchair. Her hair is now purple. She's near water with a fountain and lots of trees. She looks happier and healthier.

“Soon, I started to get better and heal, emotionally and physically,” Kyla wrote on TikTok. “Now I’m stronger than ever and starting to live my life again for the first time in two years.”

In sharing her story online, Kyla reminds others in her situation that they are not alone and that healing can still be possible!

You can find the source of this story’s featured image here!

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