About

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  1. andrea weatherill says:

    I have pvnh, I’ve been living with it all my life. I have been told I was misdiagnosed when I was 2 years old. Doctors told my parents I was having convulsions due to a fever. When I was 13, the symptoms began: slurring of my speech, facial ticks and unable to read and write as well as I had before. My parents didn’t believe I was having problems and told me it was just puberty. At the age of 20, seizures started to happen. From spacing out (absent seizures) to being on the floor (tonic clonic seizures). I suffer from all sorts of seizures, but I haven’t let it stop me from living a normal life. My neurologist says there’s no cure as it’s a malformation of the brain in foetal stage, that the x chromosome had mutated (linked to chromosome 5). This condition is inherited but usually only in 1 in 5 females.

    My MRI scans show I have cysts in my brain and literally just over half of brain. People who don’t know how to deal with my medical condition make fun of me but at least I can say at least I have a brain and photos to prove it! I function normal too, I drive, work and go to uni. Every day I fight seizures from happening but they still scare me. I haven’t had one in a year but the fear and warning of one coming is daily.

    • Yolaine Dupont says:

      Dear Andrea,
      Thank you for sharing your story! We would love for your to consider joining our PVNH Support & Awareness community where we support more than 160 families worldwide, and also participate in World PVNH Disorder Awareness Day on August 7.
      I’ll send you an email with details.
      Huge hugs,
      Yolaine

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