Klippel-Feil Syndrome Blog

journaling outside the box

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Healing in a world but not of it.

Category: PROJECT ECHOHEART (KFS)

  • Project Echoheart: When Doctors fall silent in awe

    When the world gets overwhelming. What do you do? Do you stand and fight? Do you sit in the silence, or the loudness? How many doctors will stand in awe? Curiosity is beautiful but is there anything after the curiosity? When textbooks don’t cover what you experience. Is it possible humans are less inclined to…

  • PROJECT ECHOHEART: The Water That Walks In Uncalled.

    Welcome back fellow beings. Hope you are all making it through the terrain of winter. When the emotional storm arrives, who do you become? Who are we, WITH our emotions? Are you a rollercoaster? Are you the feeling? Are you the witness? Are you the cause? Or are you indeed the remedy? Has your body…

  • Project Echoheart: The Plant That Walks Alongside Mutation.

    Hello everyone! Hope you are all doing okay. As we head into the darkness of winter, to hibernate and reflect. The mountains can get very dark this time of year, oh and freezing! You have to remember to do those things that make you happy! Lets get into it! Can you ask yourself this question,…

  • PROJECT ECHOHEART: Grief, Then Healing, Then Grief Again.

    These field notes are from the middle of grief. You don’t need to explain yourself here. You can’t just give yourself away like it means nothing. What have you buried deep, to make others feel comfortable? As humans we are quickly moving towards total suppression of self. This means we are holding on to all…

  • PROJECT ECHOHEART: The Alchemy Of Pain, Clarity Over Incurability

    What is pain’s language if we decode it? Could pain be more than just physical? Where does pain sit in reality? What if longstanding pain is a flag and not a flaw, symptom or signal? What is the pattern? Can we choose protection over numbing? Can we choose to honour our signals with boundaries? Questions…

  • RARE MUTATION PACT….

    RARE MUTATION PACT. I document Klippel-Feil Syndrome not as a symptom, but as a signal. I am mapping boundary flares into data. I honour nervous system refusal and question medical norms with tenderness. I respect all paths to relief and only speak from the landscape of my own body. This codex lives for clarity, not…

  • PROJECT ECHOHEART: Genetic Resilience, Rethinking the biology of healing.

    Hello and welcome back, hope you’re shining.Today, I want to explore a new way of thinking about healing, not just as effort, but as a pull to follow our genetic instructions. What if we’re not broken, just wired differently?What if healing isn’t about fixing, but about remembering the blueprint we were born with? By tuning…

  • PROJECT ECHOHEART: Klippel-Feil, Genetic passport to perception.

    Well hello there, My name is Crystal-Lily, how are we all doing this fine start of July? As said before I want to go through this ever so slow, learn together. Today I will be trying my best to execute possible questions and even maybe even change your mind on how the body works. We…

  • PROJECT ECHOHEART: Genes, dreams and a dash of chaos: The unexpected blueprint of discovery.

    “Well hello, beautiful being—if you’ve tripped into the depths of the internet and landed here, welcome! And if you’re returning, hello again!” This post is all about what I’ve been diving into lately. Today, I realized I may need genetic testing, so I’m exploring different organizations for support. When I was first diagnosed, my focus…

  • WE THE MONSTERS

    Welcome back! And if you’re new, hello and welcome to my blog.This space is where I explore rare syndrome, genetic anomalies, and the overlooked corners of science and history. Today, I’m diving into something deeply personal: the background and forgotten history of Klippel-Feil Syndrome (KFS), why this genetic defect has been missed, dismissed, and even…