Join the Conversation on
4.2K people
0 stories
688 posts
  • About Hydrocephalus
  • Explore Our Newsletters
  • What's New in Hydrocephalus
    See full photo

    Picture Description: Strength is someone fighting Hydrocephalus with a smile on their face.


    2 reactions
    See full photo

    Picture Description: I shouldn't be able to spell Hydrocephalus, none of us should, yet here we are.

    Find humor in ur disability. If you find humor in your disability, then you'll get through it.
    #CongenitalHydrocephalus #Hydrocephalus

    4 reactions 1 comment

    I’m new here!

    Hi, my name is PrincessAnna. I'm here because I have congenital hydrocephalus diagnosed in my mid forties. I’m searching for the best quality of life I can find.

    #MightyTogether #Migraine #Depression #Anxiety

    6 reactions 2 comments

    Reclaiming My Body After Trauma and Hydrocephalus

    I am someone who has lived through significant #Trauma including sexual assault and multiple surgeries due to severe physical abuse that resulted in hydrocephalus and 22 brain / abdomen surgeries.  Part of the aftermath of all of this was a deep sense of shame and guilt over what happened to me, especially physically.  I am working on it in therapy and my therapist is trying to instill in me self-confidence.  I am also big on the body positivity movement and wrote another article referencing the ways in which I am practicing body positivity by accepting my hydrocephalus surgery scars.  Please see:


    One of my dreams has always been to wear a bikini because it makes me feel like I am just like every other person who can wear a bikini. The way I see it for me putting on a bikini is demonstrating body positivity and pride.  It is demonstrating that I am in control of my body and that I can reclaim it after all the trauma it has been through.  Summer 2022 was when I recently tried on a bikini for the first time.  These are the takeaway’s from the experience:

    I take pride in my body and all that it has endured and I know that without my scars I would not be alive!  My scars signal my fight for my right to live!
    I am in 100% control of my body – as a surgery survivor and sexual assault survivor, bodily autonomy is critical and essential!  Again I am in 100% control of my own body – it is empowering and I am empowered!
    I feel that every body type of all shapes, sizes, abilities and ethnicities should be celebrated!  We are all unique and special and deserve to be treated as such!
    Body shaming because someone “looks different” is NEVER EVER okay! I shamed myself for years into thinking I could never wear a bikini, because of my scars but that stopped the day I put on a bikini and realized that shaming myself was one of the worst things I could have done.  To myself I am sorry.  I am humbled by my body and yet amazed at its capabilities.

    What are you reclaiming Mighty community members?

    1 reaction 3 comments
    See full photo

    Look at your Spina Bifida as a positive not a negative

    Group Name: SB & Hydro Warriors group
    Title: Look at your Spina Bifida as a positive not a negative
    Date: October 24, 22

    Picture Description: We don’t always choose what happens to us, but we can choose to see it as a positive, to believe it is for the best, and to use it to grow.

    What does this quote mean to you as someone with Spina Bifida and or Hydrocephalus.

    Don’t look at your disability as a negative. Instead think of all the obstacles you overcame as someone with a disability. What are the obstacles you faced in your life that a lot of people said you wouldn’t? Please be respectful to each other. #InspirationalQuotes #SpinaBifida #Hydrocephalus

    See full photo


    Hello my followers! What is one thing that you have hope for this week? What is something that gives you hope for a good week ahead? #Hope #Healing #MightyTogether #Depression #Anxiety #PTSD #Hydrocephalus

    See full photo


    Hello my followers! How are you? Here is your friendly reminder as we begin a new week! #MightyTogether #MentalHealth #Depression #Anxiety #PTSD #Hydrocephalus #AgenesisoftheCorpusCollosum

    See full photo

    My Ongoing Battle With Mental Illness

    Mental health/illness is widely considered a taboo subject. When you try to cry out/ask for help, people either ignore you or call you ‘attention seeking.’ So instead of feeling better, you end up feeling worse and closing yourself off. I have struggled with anxiety and depression for most of my life. I’ve been going to counseling for about 6 months now and it’s really helped having someone else to talk to that isn’t my family or someone that knows me. She was the first person outside my friend group that I told about me s3lf-h@rming, and she really helped me sort through the emotions that I was keeping inside. I was born 3 months premature and have many medical problems. I was diagnosed with hydrocephalus at birth and as a result of that, have had many surgeries, the earliest being when I wasn’t even a year old. I am so unbelievably blessed to have found such a loving and trusting community where I can share my story. For anyone else who’s struggling with anxiety/depression, hang in there. Your life is 100% worth it. You are loved. You are valuable. Take it from someone who did, at one point, consider ending it all. Please don’t give up. #MentalHealth #Hydrocephalus #Depression #Anxiety

    See full photo


    Hello #MightyLeaders How are you doing? I just submitted a story for publication on #TheMighty and am hoping that it will be published!! #CheckInWithMe #Hydrocephalus