N/A is the main language of Beckwith Wiedemann Syndrome facebook group. It is a CLOSED group. Beckwith Wiedemann Syndrome has 1,953 members. So people rank it like a Medium group. You can find this group by searching 78357624606 on Google, Bing or Yahoo. Last update is on 2015-03-23 06:10:30.
Please introduce yourself and your interest in BWS on acceptance into the group.
Beckwith-Wiedemann syndrome (BWS) is an overgrowth syndrome, one of several such medical conditions identified by geneticists. BWS is named for the physicians who first described the association of body overgrowth (increased birth weight, height and head circumference), omphalocele (failure of abdominal wall closure), macroglossia (enlarged tongue), hypoglycemia (low blood sugar) and other physical characteristics. Patients with BWS are also at an increased risk of developing certain types of cancer. However, little is known about the cancer risk to a specific individual with BWS or how the genetic change in BWS are related to the occurrence of cancer.*
My son Nicholas was born at 33 weeks gestation with BWS. After a terrible pregnancy, I was unaware that he would be born with a syndrome. Due to symptoms during my pregnancy I had a amnio. When he was born he was handed to me for a few minutes, then taken away for resuscitation. I instantly knew something was wrong with him as he had a very large protruding tongue, funny ears and a big tummy. Although the midwives kept saying what a beautiful boy he is. Later that afternoon the paediatrician came in and said "I think your son has BWS, dont worry he will just be a big baby" then he left. Well, as soon as you here the word "syndrome" you immediately panic. Knowing nothing i was devastated. All i kept thinking was my baby has a SYNDROME. Well thankfully with much support.reading the BWS sites and emailing Dr Beckwith, I learnt that it was not as bad as i first imagined. I hope this site will bring awareness to BWS, and help other people who are affected by it to find people in similar situations.
This page is for family and friends associated with kids with BWS to share stories, advice and support with each other. If you would like to join the page please like it. NOTE - this page is not for people to advertise their sales items and the person posting such will be removed from the page and the post removed. (This has been added for the people who continually join and post their shoe sales) This is a support page for families and friends with children with BWS. :)