I Have Brown-vialetto-van Laere Syndrome

A Brown-Vialetto-Van Laere Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Brown-Vialetto-Van Laere Syndrome. You're not alone. 9 People

    My Children

    I have two children diagnosed with Brown-Vialetto-Van Laere. I am trying to find others with this disease. My daughter was 16 months when symptoms "appeared" (her hearing had probably already started to deteriorate, but we hadn't really noticed) - perfectly healthy...
    Panga Panga
    31-35
    1 Response Aug 10, 2008

    My Daughter Has Bvvl

    My daughter is 11 and has recently been diagnosed with BVVL, it's a long story but one I am willing to share and compare with other parents of children with BVVL, I'd like to hear your experiences. Look forward to hearing from you all. Tracy.
    mckenzie22 mckenzie22
    26-30, F
    1 Response Jun 9, 2012

    My Children

    I have two children diagnosed with Brown-Vialetto-Van Laere. I am trying to find others with this disease. My daughter was 16 months when symptoms "appeared" (her hearing had probably already started to deteriorate, but we hadn't really noticed) - perfectly healthy...
    Panga Panga
    31-35
    Aug 10, 2008

    Daughter Clinically Diagnosed With Bvvl

    hello, our precious daughter (8yrs) does not have a clear diagnosis but is suspected to have bvvl. she has been "clinically diagnosed" as having bvvl. she has severe hearing loss (bilateral), seizures (ketogenic diet has helped control them), muscle weakness. all this started at...
    bellesmom bellesmom
    36-40, F
    5 Responses Sep 29, 2011
More Stories