Diana’s case stumped the doctors she saw, and she had to advocate for herself at a time when she could barely think. Here is Diana’s story.
Patient Stories: A sudden illness, a swift resolution
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Patient Stories
Find out what it’s like to live with spinal CSF leak through the experiences of our patient storytellers. Read their accounts below, or watch them share their stories through video.
Patient Stories: A 20-year mystery
Kimberly lived with symptoms for 20 years before she was correctly diagnosed and treated. Here’s Kimberly’s story.
“I became disabled overnight. Now I work and parent from bed.”
Like so many people who experience iatrogenic spinal CSF leak, Samantha Brandon had no idea how risky a routine lumbar puncture could be.
A Caregiver’s Perspective: Burke’s story
When Jack showed symptoms of a spinal csf leak at age 14, his parents Burke and Jody had to push hard for him to be taken seriously. See Burke’s story of being a caregiver for a child with spinal CSF leak.
A Caregiver’s Perspective: Jody’s story
When Jack showed symptoms of a spinal csf leak at age 14, his parents had to push hard for him to be taken seriously. See Jody’s story of being a caregiver for a child with spinal CSF leak.
Pushing back against denial: Jack’s spinal CSF leak story
When Jack showed symptoms of a spinal CSF leak at age 14, his parents had to push hard for him to be taken seriously. Here is Jack’s story.
A Caregiver’s Perspective: Amberly’s story
When Amberly’s daughter Emma became ill, she was surprised by how elusive diagnosis and treatment were. See Amberly’s story of being a caregiver for a child with spinal CSF leak.
A sudden onset, a search for treatment: Emma’s spinal CSF leak story
Emma was an incredibly active child when she started exhibiting symptoms of spinal CSF leak. Now nearly 12 years into her recovery, she shares her experience with us here.
A Caregiver’s Perspective: Karri’s story
When Karri’s daughter Hailey became ill, it started their family on a ten-year search for answers. See Karri’s story of being a caregiver for a child with spinal CSF leak.
A decade-long search for answers: Hailey’s spinal CSF leak story
Hailey got her spinal CSF leak playing soccer as a child. It took her TEN YEARS to find a diagnosis and effective treatment. See her family’s stories here.
Tough Mothers: Happy Mother’s Day
A round-up of all our posts from this Mother’s Day about mothering with a spinal CSF leak.
Tough Mothers: Kat Clavell-Bate
Kat, mother of one, shares her thoughts on parenting with a spinal CSF leak.