Zero sympathy.
United Healthcare denied my twins cranio helmets that would allow life saving skull surgeries for craniosynostosis because they had a blanket ban on cranio helmets
Could have sued but they would have died waiting.
Changed providers cause they were new borns.
United Healthcare denied my twins cranio helmets that would allow life saving skull surgeries for craniosynostosis because they had a blanket ban on cranio helmets
Could have sued but they would have died waiting.
Changed providers cause they were new borns.
December 4, 2024 at 3:56 PM
Zero sympathy.
United Healthcare denied my twins cranio helmets that would allow life saving skull surgeries for craniosynostosis because they had a blanket ban on cranio helmets
Could have sued but they would have died waiting.
Changed providers cause they were new borns.
United Healthcare denied my twins cranio helmets that would allow life saving skull surgeries for craniosynostosis because they had a blanket ban on cranio helmets
Could have sued but they would have died waiting.
Changed providers cause they were new borns.
Et ce qui est intéressant, c'est que cet homme souffrait d'une forme rare du syndrome de Crouzon, d'où son crâne déformé (Craniosynostosis) : 23cm de long pour seulement 12cm de large.
June 25, 2026 at 7:45 AM
Et ce qui est intéressant, c'est que cet homme souffrait d'une forme rare du syndrome de Crouzon, d'où son crâne déformé (Craniosynostosis) : 23cm de long pour seulement 12cm de large.
Also, I love your banner! 🙌🏽
This is my “Critter,” aka the Kranio Kid! (Named for craniosynostosis; he’s had 3 neurosurgeries.)
He’s outgrown his costume, but he used to show up to the hospital in full superhero regalia to visit the other kids before pre-op. 🦸🏻♂️♿️✨
Surgery #42 on the horizon.
This is my “Critter,” aka the Kranio Kid! (Named for craniosynostosis; he’s had 3 neurosurgeries.)
He’s outgrown his costume, but he used to show up to the hospital in full superhero regalia to visit the other kids before pre-op. 🦸🏻♂️♿️✨
Surgery #42 on the horizon.
January 22, 2025 at 5:28 PM
Also, I love your banner! 🙌🏽
This is my “Critter,” aka the Kranio Kid! (Named for craniosynostosis; he’s had 3 neurosurgeries.)
He’s outgrown his costume, but he used to show up to the hospital in full superhero regalia to visit the other kids before pre-op. 🦸🏻♂️♿️✨
Surgery #42 on the horizon.
This is my “Critter,” aka the Kranio Kid! (Named for craniosynostosis; he’s had 3 neurosurgeries.)
He’s outgrown his costume, but he used to show up to the hospital in full superhero regalia to visit the other kids before pre-op. 🦸🏻♂️♿️✨
Surgery #42 on the horizon.
The middle-aged man had craniosynostosis -- premature fusion of three skull sutures -- which was typically fatal in childhood in the Medieval period. 🏺🧪
'I had never seen a skull like this before': Medieval Spanish knight who died in battle had a rare genetic condition, study finds
The extremely long skull of a medieval knight points to an underlying genetic condition.
www.livescience.com
November 25, 2025 at 12:54 PM
The middle-aged man had craniosynostosis -- premature fusion of three skull sutures -- which was typically fatal in childhood in the Medieval period. 🏺🧪
if u ever wondered why i wear a wig, i was born with craniosynostosis and i had to get a corrective surgery that left a massive scar that i dont like people seeing.
August 11, 2026 at 3:40 PM
if u ever wondered why i wear a wig, i was born with craniosynostosis and i had to get a corrective surgery that left a massive scar that i dont like people seeing.
Why do some cranial sutures fuse too early? New FaceBase data point to timing: FGFR2 signaling normally declines after birth, dialing down retinoic acid to keep the coronal suture open. Overactivate it and the suture closes. RNA-Seq, Chai lab, USC. @ccmb.usc.edu www.facebase.org/2026/08/04/r...
August 5, 2026 at 4:46 PM
1. I was actually born with a rare medical condition! Craniosynostosis to be exact!
look it up, I don't wanna explain.
look it up, I don't wanna explain.
November 4, 2025 at 12:03 AM
1. I was actually born with a rare medical condition! Craniosynostosis to be exact!
look it up, I don't wanna explain.
look it up, I don't wanna explain.
Turns out my little dude has sagittal craniosynostosis. His skull bones are prematurely fused so next week they have to cut him a new fontanelle. Scared shitless tbh.
February 9, 2025 at 3:55 PM
Turns out my little dude has sagittal craniosynostosis. His skull bones are prematurely fused so next week they have to cut him a new fontanelle. Scared shitless tbh.
Introduce yourself with what almost killed you:
Hi I’m a preemie with craniosynostosis.
Hi I’m a preemie with craniosynostosis.
Introduce yourself with what almost killed you:
Pneumonia with a loculated pleural effusion your GP missed because “idk brah drink fluids and take Tylenol, don’t be a pussy” isn’t a treatment plan
Pneumonia with a loculated pleural effusion your GP missed because “idk brah drink fluids and take Tylenol, don’t be a pussy” isn’t a treatment plan
Introduce yourself with what almost killed you:
Hi, I’m a borrowed van with failing brakes and a midnight colored female moose on the highway.
Hi, I’m a borrowed van with failing brakes and a midnight colored female moose on the highway.
January 3, 2026 at 1:59 AM
Introduce yourself with what almost killed you:
Hi I’m a preemie with craniosynostosis.
Hi I’m a preemie with craniosynostosis.
Progress in craniosynostosis research! AdCr meetings unite clinicians, researchers & families to tackle this condition. Latest Journal of Anatomy issue honours Prof. Gillian Morriss-Kay & features 10 interdisciplinary studies.
doi.org/10.1111/joa....
#Craniosynostosis #AdCr
doi.org/10.1111/joa....
#Craniosynostosis #AdCr
Editorial: Advances in craniosynostosis—Basic science to clinical practice
Click on the article title to read more.
doi.org
November 26, 2024 at 7:11 AM
Progress in craniosynostosis research! AdCr meetings unite clinicians, researchers & families to tackle this condition. Latest Journal of Anatomy issue honours Prof. Gillian Morriss-Kay & features 10 interdisciplinary studies.
doi.org/10.1111/joa....
#Craniosynostosis #AdCr
doi.org/10.1111/joa....
#Craniosynostosis #AdCr
We document everything for his medical team for better meds and quality of life.
Republicans are hellbent on ruining his life.
Please don’t let them.
He’s my ♥️.
Please keep calling.
202-224-3121
#TrumpsHealthCareShutdown
/end
Republicans are hellbent on ruining his life.
Please don’t let them.
He’s my ♥️.
Please keep calling.
202-224-3121
#TrumpsHealthCareShutdown
/end
October 6, 2025 at 5:21 PM
We document everything for his medical team for better meds and quality of life.
Republicans are hellbent on ruining his life.
Please don’t let them.
He’s my ♥️.
Please keep calling.
202-224-3121
#TrumpsHealthCareShutdown
/end
Republicans are hellbent on ruining his life.
Please don’t let them.
He’s my ♥️.
Please keep calling.
202-224-3121
#TrumpsHealthCareShutdown
/end
On the subject of what I just reposted: I grew up being told that I would not be able to get healthcare after a certain age because I was born with a "preexisting condition" (craniosynostosis). Even though, post-surgery, I would either live to 100 without complications or randomly drop dead someday.
December 15, 2025 at 5:18 AM
On the subject of what I just reposted: I grew up being told that I would not be able to get healthcare after a certain age because I was born with a "preexisting condition" (craniosynostosis). Even though, post-surgery, I would either live to 100 without complications or randomly drop dead someday.
A phrenologist with craniosynostosis is found pushed out of a third-floor window during a long sermon. Suspicion falls on Midsomer Morton’s infosec community, confused that crows stealing and moving balls on the 15th hole might threaten the great bake off.
July 23, 2026 at 6:04 PM
A phrenologist with craniosynostosis is found pushed out of a third-floor window during a long sermon. Suspicion falls on Midsomer Morton’s infosec community, confused that crows stealing and moving balls on the 15th hole might threaten the great bake off.
A phrenologist with craniosynostosis is found quilled to death. Suspicion falls on White Ox Mead’s hyrlîan team, angry that pregnancy testing kits that take minutes to work might threaten supplies of “grow it big” cream.
February 1, 2026 at 4:05 PM
A phrenologist with craniosynostosis is found quilled to death. Suspicion falls on White Ox Mead’s hyrlîan team, angry that pregnancy testing kits that take minutes to work might threaten supplies of “grow it big” cream.
Check out the latest publication from Chai lab at CCMB! 🧪 #CCMBUSC #Craniosynostosis #Science #ScienceSky
Why do #coronal sutures sometimes fuse too early? In mice, excessive FGFR2–P38 signaling increased #retinoic acid and premature bone formation. Restoring retinoic acid signaling kept the suture open and improved #neurocognitive outcomes.👇
@ijosjournal.bsky.social
www.nature.com/articles/s41...
@ijosjournal.bsky.social
www.nature.com/articles/s41...
August 18, 2026 at 4:15 PM
Check out the latest publication from Chai lab at CCMB! 🧪 #CCMBUSC #Craniosynostosis #Science #ScienceSky
While I love the initiative of donating $13 to Children's Mercy, I will instead be making a donation to the Alberta Children's Hospital in Calgary, Canada.
My son was born with sagittal craniosynostosis, and it was the amazing surgeons and nurses and support staff at ACH that took care of us.
My son was born with sagittal craniosynostosis, and it was the amazing surgeons and nurses and support staff at ACH that took care of us.
December 13, 2024 at 8:26 AM
While I love the initiative of donating $13 to Children's Mercy, I will instead be making a donation to the Alberta Children's Hospital in Calgary, Canada.
My son was born with sagittal craniosynostosis, and it was the amazing surgeons and nurses and support staff at ACH that took care of us.
My son was born with sagittal craniosynostosis, and it was the amazing surgeons and nurses and support staff at ACH that took care of us.
Midterms are done 😭 craniosynostosis syndromes hurt my head
March 5, 2025 at 4:57 PM
Midterms are done 😭 craniosynostosis syndromes hurt my head
My grandfather gave me one and it hides a ear-to-ear scar from craniosynostosis I got when I was four months old that hair used to hide be doesn’t now that I’m bald
May 26, 2025 at 9:45 PM
My grandfather gave me one and it hides a ear-to-ear scar from craniosynostosis I got when I was four months old that hair used to hide be doesn’t now that I’m bald
That weird shape used to be a sign of …
well, I’ll let the article explain 🙄 except to note that it would not surprise me if craniosynostosis was involved with dump
well, I’ll let the article explain 🙄 except to note that it would not surprise me if craniosynostosis was involved with dump
Craniosynostosis | Symptoms, Diagnosis & Treatment
Craniosynostosis is the early fusion of two or more bones of the skull and it can interfere with normal growth of the brain and skull. Learn more.
www.cincinnatichildrens.org
September 8, 2024 at 6:31 PM
That weird shape used to be a sign of …
well, I’ll let the article explain 🙄 except to note that it would not surprise me if craniosynostosis was involved with dump
well, I’ll let the article explain 🙄 except to note that it would not surprise me if craniosynostosis was involved with dump
Craniosynostosis vs. Secondary Microcephaly with #HIE:
#NeuroSky -- How are you counseling families re: craniosynostosis vs. secondary microcephaly from HIE?
This is an age-old issue of getting referred to neurosurgery & it not being craniosynostosis creating panic & anxiety.
#NeuroSky -- How are you counseling families re: craniosynostosis vs. secondary microcephaly from HIE?
This is an age-old issue of getting referred to neurosurgery & it not being craniosynostosis creating panic & anxiety.
November 20, 2024 at 2:49 PM
Rory Potter was born with craniosynostosis leaving him with a fused skull, but experts used ‘super elastic’ springs during reshaping surgery to treat him
‘Cheeky’ baby boy given world-first surgery for rare skull condition
www.thetimes.com
September 8, 2026 at 9:16 AM
Rory Potter was born with craniosynostosis leaving him with a fused skull, but experts used ‘super elastic’ springs during reshaping surgery to treat him
Micheal Berryman is also in this film, likely because he and Craven worked together on THE HILLS HAVE EYES, and he's is a guy BORN to be on film. He looks AMAZING.
Berryman was apparently born with hypohidrotic ectodermal dysplasia, which lead to craniosynostosis, giving him a unique look.
Berryman was apparently born with hypohidrotic ectodermal dysplasia, which lead to craniosynostosis, giving him a unique look.
September 25, 2026 at 1:54 AM
Micheal Berryman is also in this film, likely because he and Craven worked together on THE HILLS HAVE EYES, and he's is a guy BORN to be on film. He looks AMAZING.
Berryman was apparently born with hypohidrotic ectodermal dysplasia, which lead to craniosynostosis, giving him a unique look.
Berryman was apparently born with hypohidrotic ectodermal dysplasia, which lead to craniosynostosis, giving him a unique look.
Elastic cranial sutures between the skull bones accommodate the expanding brain during growth. These sutures fuse prematurely in #craniosynostosis ⚕️
https://www.nature.c...
https://www.nature.c...
April 12, 2025 at 5:17 PM
Elastic cranial sutures between the skull bones accommodate the expanding brain during growth. These sutures fuse prematurely in #craniosynostosis ⚕️
https://www.nature.c...
https://www.nature.c...
If you are passionate about #skulls and #craniosynostosis then join us for 4th Advanced in Craniosynostosis on 28th Aug 2026 @uclengineering.bsky.social Please reserve your ticket at: tiny.cc/AdCR4
@uclengineering.bsky.social @ucl-c4ia.bsky.social @karenjliu.bsky.social @Steve Twigg @Headlines
@uclengineering.bsky.social @ucl-c4ia.bsky.social @karenjliu.bsky.social @Steve Twigg @Headlines
June 29, 2026 at 3:51 PM
If you are passionate about #skulls and #craniosynostosis then join us for 4th Advanced in Craniosynostosis on 28th Aug 2026 @uclengineering.bsky.social Please reserve your ticket at: tiny.cc/AdCR4
@uclengineering.bsky.social @ucl-c4ia.bsky.social @karenjliu.bsky.social @Steve Twigg @Headlines
@uclengineering.bsky.social @ucl-c4ia.bsky.social @karenjliu.bsky.social @Steve Twigg @Headlines