Hi, my name is Jillian :). I’m new to The Mighty and look forward to sharing my true… YES, it IS true, story!
#ExocrinePancreaticInsufficiency
#MultipleSystemAtrophyWithOrthostaticHypotension
#CommonVariableImmuneDeficiency
#InappropriateSinusTachycardia
#VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems
#PostmyocardialInfarctionSyndrome
#Addison 'sDisease
#Meniere 'sDisease
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Hi, my name is JEverette23. I’m new to The Mighty and look forward to sharing my story.
#MightyTogether #FibrousDysplasia #Arthritis
Hi, my name is nikkideeley. I’m new to The Mighty and look forward to sharing my story.
Hey guys, I hope everyone is doing ok, despite the pandemic. I've been struggling with craniofacial fibrous dysplasia and I have reached the edge. Been to the doctor and he ordered me to do a bone scintigraphy. Since I got this D-x, I've been hearing that this illness usually stops prior to the adulthood. But, according to the exam, mine is active and I am turning 40 in a few months.
I've been in a lot of pain and dealing with constant tinnitus which is driving me crazy. Last week, I also went to the ENT and as he saw my CT, he saw there is bone growth in the area close to the ear, hence the tinnitus and dizziness.
Is anybody facing this issue as well? I will need to replace the jaw and the TMJ due to the dysplasia and the arthritis.
#Fibromyalgia It’s absolutely crazy how fibro can be tricky at times. I’ve been feeling agonizing pain on my head, got the dx of #FibrousDysplasia and then, I’ve been to the doctor and he says my real issue is fibromyalgia 😞. It’s to blame for the pain I have been dealing for months. I am absolutely exhausted. Wish I could toss everything out of my life. Sorry for venting. This is something I cannot share with my family. They still have that sense that fibromyalgia is something in my head 🙄
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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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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#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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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 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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