Crouzon Syndrome

Join the Conversation on
Crouzon Syndrome
243 people
0 stories
81 posts
  • About Crouzon Syndrome
  • Explore Our Newsletters
  • What's New in Crouzon Syndrome
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    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

    1 comment
    Post
    See full photo

    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

    3 comments
    Post
    See full photo

    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

    1 comment
    Post
    See full photo

    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

    Post
    See full photo

    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

    3 comments
    Post
    See full photo

    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

    Post
    See full photo

    What the first thing...

    You want to do after the stay- at-home orders are lifted?

    I’d like to go to a baseball game with family.

    #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

    6 comments
    Post
    See full photo

    How do you cope with medical anxiety?

    How do you handle pre-surgery anxiety or the fear that comes before a medical procedure? I like to focus hard on taking care of myself. I also consciously catch my worry thoughts and say “nope I’m going to set aside time to worry about it tomorrow morning on my way to the hospital.” What are some other ways to manage the “surgery scaries?”. #craniofacial #ApertSyndrome #CrouzonSyndrome

    1 comment
    Post
    See full photo

    #52SmallThings Challenge - Reading

    What are you reading? Do you want to start, but feel overwhelmed? Don’t worry, do what you can with what you have. Check out a few lines of poetry or text? Revisit your favorite book. You got this. #craniofacial #CrouzonSyndrome

    2 comments
    Post
    See full photo

    Today is #MoebiusSyndrome Awareness Day

    How are you going to raise awareness today. #craniofacial #CrouzonSyndrome #moebius