World map of Beckwith-Wiedemann Syndrome


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Beckwith-Wiedemann Syndrome stories


TINA'S STORY


I also have fraternal twin sons (b. 2007) who both have BWS. All the of us have had tongue reductions and have gone through tumor screenings. Only one of us currently has issues with hemihypertrophy. Feel free to ask me any questions you might have....

Views: 890 Dec 29, 2015, 9:44 PM by Tina

MY DAUGHTER BAILEE


My daughter Bailee was born November 2014, she has Beckwith-Weidemann Syndrome, Full left sided Hemihypertrophy, and Congenital Junctional Ectopic Tachycardia. 

Views: 773 Dec 21, 2015, 12:42 PM by Kaidee

TAMMY THOMAS'S STORY


My daughter was born with BWS hemi in August 1992. 5 1/2 weeks in NICU due to very low blood sugar. Took out 95% of her pancreas and she has had normal levels ever since. Surgeries later for tonsils/adenoids removal, 2 for lazy eye, stopped bone grow...

Views: 704 Apr 20, 2016, 6:50 PM by Tammy Thomas

POLAM'S STORY


3 year old daughter with BWS and HI

Views: 678 Jan 25, 2016, 1:01 AM by Polam

CASON


Cason was prenatally diagnosed with an omphalocele containing only bowel and an adrenal hematoma at 18 weeks. We had an amniocentesis done at 20 weeks and it showed no abnormalities. He measured very large for gestational age and always had his tongu...

Views: 646 May 22, 2017, 10:25 AM by Candice

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Beckwith-Wiedemann Syndrome forum


SINDROME DI RUSSELL SILVER


Views: 657 Dec 21, 2015, 4:25 PM by Luana Architetta

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