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Beckwith-Wiedemann Syndrome BWS - HOWBIGBWS BWS Awareness. For more information visit http://www.howbigbws.com
What is Beckwith-Wiedemann Syndrome?
Beckwith Wiedemann Syndrome is a congenital overgrowth disorder usually present at birth. BWS is characterized by large body size, enlarged organs, macroglossia (enlarged tongue), midline abdominal wall defects (omphalocele/exomphalos, umblicial hernia, diastasis recti), neonatal hypoglycemia and greatly increased risk of childhood cancer, particularly liver and kidney tumors.
What causes Beckwith-Wiedemann Syndrome and who is affected?
The causes of BWS are not always fully understood, although genetic testing has shown many patients to have changes in the genes of chromosome 11. Beckwith-Wiedemann Syndrome has an estimated occurrence of one in 14,000. BWS has been documented in many different ethnic groups from around the world and occurs equally in males and females. Some cases of BWS are inherited, but most are sporadic.
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About this Video:
This BWS Awareness video was put together to help bring awareness to Beckwith Wiedemann Syndrome which is commonly know as BWS. We worked together with the community from HOWBIGBWS and wanted to let people know more about this syndrome and the effects that it has on individuals. This Beckwith-Wiedemann Syndrome BWS Awareness Campaign will help you see what families will have to go through when having a child who is born with BWS.
Discovering life beyond the diagnosis.
Our son Jacob was diagnosed with a rare chromosome disorder, Beckwith-Wiedemann Syndrome. I remember desperately searching for stories of other children with BWS to see their outcome because we just didn't know what to expect. Here we are, 5 years later, and we are so thankful to have him in our lives. The beginning months are tough, but you will make it through with love, hope, and faith.
We welcome you to visit our website with information on BWS, blogs, and more:
http://www.mybwsbaby.com/bws-b....eyond-the-later-year
