Come take a look at our Photo Show! You can see photos of many of our beautiful kids!

Please visit our BWS Kids Cancer Tribute Page.

Beckwith-Wiedemann Family Forum Q&A

The Beckwith-Wiedemann Syndrome and Isolated Hemihyperplasia Research Team

Predicted AFP levels in children with BWS to age 3 years

Questions that a parent might ask:

• What exactly is BWS?
• Why did my child get this? Did I do something?
• What features are associated with BWS?
• How can I tell if my child has BWS?
• Is there anything I can do to prevent my child having BWS? Is there any way to know ahead of time?
• What risks does my child face?
• What do I need to do?
• Where can I get genetic testing done?

Notes from the Beckwith-Wiedemann Research Team:

• A Note From Doctor Beckwith
• A Note From Dr Choyke - (1) ultrasound scans and (2) fasting before ultrasounds
• A Note From Dr Marsh - Common Questions for the Surgeon About Tongue Reduction for Individuals with Beckwith-Wiedemann Syndrome (BWS)
• Cancer Screening Protocol - written by Dr Debaun
• How to Choose a Health Care Provider
• Association of in vitro fertilization with Beckwith-Wiedemann syndrome and epigenetic alterations of LIT1 and H19

Brochures:

• Understanding Beckwith-Wiedemann Syndrome and Isolated Hemihyperplasia - a brochure from Washington University School of Medicine
• Understanding Overgrowth Syndromes - a brochure from Washington University School of Medicine

A Glossary of BWS Terms:
Glossary A-L
Glossary M-Z

Links to Other Sites of Interest

Beckwith-Wiedemann Research Team Annual Clinic
 

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