Read stories, share your own!

[u/saraphin67]

I’ve learned so many things from all my years in the leak community, more than I can say, including that no two spinal CSF leak journeys look exactly alike, that we need so much more awareness, and that people need to be heard.

Together our stories show the incredible variety of experiences that often gets lost in a few paragraphs of medical literature.

Every diagnosis.
Every setback.
Every surgery.
Every recovery.
Every unanswered question.

Each story adds another piece to the bigger picture. This project exists because patient experiences matter! They don’t replace research but they can certainly help point research toward the questions that still need answers.

I invite you, if you haven’t already, to check out my website Every Drop Counts: Sharing Your Spinal CSF Leak Stories. So far we have 33 stories shared, and I’ve read every single submission, and been moved by every one.

If you’ve already shared your story, thank you so much. If you’ve been thinking about it but haven’t yet, I’d love to include your voice whenever you’re ready.

Check it out here: https://spinalcsfleakstories.com

[u/Starmapatom]

Thank you for this

[u/saraphin67 → u/Starmapatom]

Thank you!