Goldenhar Syndrome

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Goldenhar Syndrome
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Broken record conversation #

Ok this hasn't happened in years but it still bugs me...I'm in the dentist's office to get a consult from the periodontist about my receding gums. I don't know if that is part of my Goldenhars Syndrome. But that's besides the point. He looks at me and says "What happened to you? Do you have a palsy?" At first I'm like What?? Then I remember the facial difference he is referring to and explain what I have and that I have had several surgeries for GS. He then says "Did they not work because they were done at the wrong time?" At that point I say, "what do you mean it didn't work? I can eat, breathe, and speak. How is that not working? " He then dropped it and went on with the consult. This is not the first time I've had this conversation. Nor is it the first time I've had it with a medical professional. Am I the only one who finds it mind boggling that I still have to have this conversation after 50 years??? #GoldenharSyndrome #FacialDifference

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Hello I'm new

Hello I'm new. I'm also new to Socialising in general so I'm really anxious. I have a very secluded life and I am lonely. I look falword to makeing a fool of myself as I get used to the world of Socialising 🤣. I may get a fue things wrong and please let me know as I do so. My problems include the following #Depression #Autism #FunctionalNeurologicalDisorder #GoldenharSyndrome #ADHD #PTSD #Anxiety #Dissociation #BasilarInvagination (Basilar Invagination problem with spine and neck)

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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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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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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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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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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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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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