Goldenhar Syndrome

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    kdmnm
     • 
    ·
    @kdmnm
    October 15, 2022

    I’m new here!

    Hi, my name is kdmnm. I'm here because my daughter was born with Craniofacial Microsomia, more specifically Goldenhar Syndrome

    #MightyTogether

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    Story
    Woman’s face reflecting in small round mirror.
    Woman’s face reflecting in small round mirror.
    Leah Stock-Landis
     • 
    Goldenhar Syndrome
    December 21, 2020

    The Toxic Myths I Internalized as a Person With Facial Differences

    I am 58 years old, married, have two teenage children and a Ph.D. in clinical psychology. Yet there is a simmering part of me that feels worthless – someone to be tolerated. Someone deserving of being thought of as “deformed.” While I know these terms are eschewed in contemporary nomenclature, this is the language I [...]
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    Nonprofit
    Children's Craniofacial Association
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    @ccakids
    December 7, 2020
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    What makes you a fighter?

    What do you do that makes you strong? What steps do you take? ##craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #crouzonsyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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    Nonprofit
    Children's Craniofacial Association
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    ·
    @ccakids
    November 21, 2020
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    Hard things...how will you overcome?

    It’s not impossible. Make it possible. Share how below

    #craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #CrouzonSyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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    Nonprofit
    Children's Craniofacial Association
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    ·
    @ccakids
    November 15, 2020
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    How do you rise?

    #craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #CrouzonSyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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    Nonprofit
    Children's Craniofacial Association
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    ·
    @ccakids
    November 15, 2020
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    To live...

    Will be an awfully big adventure. #craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #CrouzonSyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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    Nonprofit
    Children's Craniofacial Association
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    ·
    @ccakids
    November 12, 2020
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    Sometimes progress can feel slow...

    Sometimes progress may feel slow, but it actually may still be happening. How are you progressing and improving your life? #craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #crouzonsyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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    Story
    close-up of a young Black woman holding a remote control, pointed at a tv
    close-up of a young Black woman holding a remote control, pointed at a tv
    Rasheera Dopson
     • 
    Rare Disease
    October 20, 2020

    What I Realized About My Own Physical Scars After Watching Netflix's 'Skin Decisions'

    I have 25 visible scars on my body representing 103 of the surgeries I have been through. I know for a fact that the seven long thick lines across my stomach represent 52 surgeries I’ve had on my digestive system alone. The two on my ankles represent the many times doctors failed to find veins [...]
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    Story
    Empty school classroom.
    Empty school classroom.
    Maria Zuccarello
     • 
    Goldenhar Syndrome
    August 16, 2020

    What True Empowerment Means for Students With Disabilities

    I am a special education teacher. I have also had the privilege (yes, I said privilege) of being a special education student in the 70s all the way through the 90s. I started in an infant class and was mainstreamed part-time in preschool. By kindergarten, I was fully included in a general education classroom with [...]
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    Nonprofit
    Children's Craniofacial Association
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    ·
    @ccakids
    April 1, 2020
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    What positive thing have you learned about yourself during the COVID-19 pandemic?

    What positive thing have you begun doing that you hope to maintain today and for years to come? #craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #CrouzonSyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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