Craniosynostosis

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Matt
 • 
@foxxy09
Epilepsy Support 1y

#Myoclonic jerks and #Essential tremor after minimal physical exertion

Hey all

My Myoclonic jerks started around 12-13, of course I just called them twitches until I know what Myoclonic jerks are

I'm currently 28 and the Myoclonic jerks are progressively becoming more frequent with some being a little more intense than others. I cannot do really any task without a jerk happening. I can have like 4-10 in the space of a minute

The essential tremor is relatively new, only the past 5 years but has significantly got worse. If I am standing for more than 5 minutes or maybe Its a hot day and I am attempting chores, my entire body will be shaking

I had an MRI a few years back with nothing showing apparently but I don't have a Neurology appointment until April 2024 and because I'm undiagnosed I never know where to turn

I have various other health issues too including craniosynostosis and a cervical spine issue also undiagnosed

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Matt
 • 
@foxxy09
Multiple Health Challenges 1y

Multiple Mental and Physical issues. Now narrowing down myself due to a decade of NHS not helping.

Hi guys,
This is my first post using this app so I'm not sure on the amount of activity and don't have the capacity to write out an entire story if it won't be read

The main things I'm seeking to talk to others about is:
Craniosynostosis
Myoclonic jerks
Hypermobility
Ichthyosis
Sleep apnea
Fibromyalgia
Cervical spine curves
Unable to do anything physically demanding

Basically I know craniosynostosis can be linked to several genetic conditions and due to the sheer number of mental and physical disabilities or symptoms I have, I feel they must be related

I understand that I should not seek anyone to diagnose or try to verify my specific condition but maybe if I find someone who has a lot of similar struggles who has a genetic disorder, I can note it down as part of my plan to narrow down my health and then go back to Drs

I'm willing to write more in Comments

Thank you

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a mother sitting with her son with a disability on her lap
a mother sitting with her son with a disability on her lap
Adelle Spindlove
 • 
Rare Disease
3y

The Change in Social Circles While Parenting a Child With a Disability

Before my son was diagnosed with a rare genetic syndrome that ultimately meant he would have a learning disability for life, we were told that he may need surgery. In very close succession we learned everything we could about craniosynostosis and hydrocephalus and braced ourselves and our friends for a possible, imminent operation. Friends from [...]
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Nonprofit
Children's Craniofacial Association
 • 
@ccakids
3y
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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
 • 
@ccakids
craniofacial 4y
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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
 • 
@ccakids
craniofacial 4y
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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
 • 
@ccakids
craniofacial 4y
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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
 • 
@ccakids
4y
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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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Nonprofit
Children's Craniofacial Association
 • 
@ccakids
craniofacial 4y
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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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Nonprofit
Children's Craniofacial Association
 • 
@ccakids
4y
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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

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