Beckwith-Wiedemann Syndrome (BWS) is a rare genetic condition that causes overgrowth in babies and increases the risk of certain childhood cancers. ACC Support UK does not provide detailed information resources or support services to those with BWS, but we hope that you will find the information and links below useful.
What Are the Main Signs of BWS?
Children with BWS may have:
- Larger than normal body parts (one side of the body may be bigger than the other).
- A big tongue (macroglossia), which can cause speech or breathing problems.
- A large belly and abdominal wall defects, like an opening near the belly button.
- High birth weight and fast growth in the first few years.
What Causes BWS?
- BWS happens because of changes in genes on chromosome 11.
- These genes control growth, and when they don’t work properly, some body parts grow too much.
- BWS is usually not inherited from parents but can sometimes run in families.
What Cancers Are Linked to BWS?
Children with BWS have a higher risk of developing certain cancers, especially:
- Wilms tumour (a kidney cancer).
- Hepatoblastoma (a liver cancer).
- Adrenocortical carcinoma (ACC, a rare adrenal gland cancer).
How is BWS Diagnosed?
Doctors diagnose BWS by looking at physical signs and doing genetic tests.
Can BWS be Treated?
- There is no cure, but doctors can manage symptoms.
- Children with BWS need regular cancer screenings (ultrasounds and blood tests) to catch any tumours early.
- Some children may need surgery to correct body growth issues.
With proper medical care, most children with BWS grow up healthy, though they may need lifelong check-ups.