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Beckwith-Wiedemann Syndrome prognosis

What is the prognosis if you have Beckwith-Wiedemann Syndrome? Quality of life, limitations and expectatios of someone with Beckwith-Wiedemann Syndrome.

Beckwith-Wiedemann Syndrome prognosis

Beckwith-Wiedemann Syndrome (BWS) Prognosis


Beckwith-Wiedemann Syndrome (BWS) is a rare genetic disorder that affects various parts of the body. It is characterized by overgrowth, specific physical features, and an increased risk of certain tumors. The prognosis for individuals with BWS can vary depending on several factors.


Physical Features:


Children with BWS may exhibit a range of physical features, including macrosomia (large body size), macroglossia (enlarged tongue), omphalocele (abdominal wall defect), ear creases or pits, and hemihypertrophy (asymmetrical overgrowth). The severity and combination of these features can vary among individuals.


Medical Complications:


BWS is associated with an increased risk of developing certain tumors, such as Wilms tumor (a kidney cancer), hepatoblastoma (a liver cancer), and adrenal tumors. The risk and severity of these tumors can vary, and early detection and treatment are crucial for better outcomes. Regular medical monitoring and screening are recommended for individuals with BWS.


Intellectual and Developmental Challenges:


While most individuals with BWS have normal intelligence, some may experience developmental delays or learning difficulties. Early intervention and appropriate educational support can significantly improve outcomes for these individuals.


Prognosis:


The prognosis for individuals with BWS depends on various factors, including the severity of physical features, the presence of associated medical complications, and the response to treatment. With early diagnosis, regular medical monitoring, and appropriate management, the long-term outlook for individuals with BWS can be favorable.


It is important to note that each individual's prognosis may be unique, and the information provided here is a general overview. Consulting with healthcare professionals who specialize in BWS can provide more personalized information and guidance.


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World map of Beckwith-Wiedemann Syndrome

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Stories of Beckwith-Wiedemann Syndrome

BECKWITH-WIEDEMANN SYNDROME STORIES
Beckwith-Wiedemann Syndrome stories
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....
Beckwith-Wiedemann Syndrome stories
My daughter Bailee was born November 2014, she has Beckwith-Weidemann Syndrome, Full left sided Hemihypertrophy, and Congenital Junctional Ectopic Tachycardia. 
Beckwith-Wiedemann Syndrome stories
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...
Beckwith-Wiedemann Syndrome stories
3 year old daughter with BWS and HI
Beckwith-Wiedemann Syndrome stories
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...

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