Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Beckwith-Wiedemann Syndrome

What is Beckwith-Wiedemann Syndrome?

Beckwith-Wiedemann Syndrome is a congenial disorder characterized by an increased risk of childhood cancer and certain features including a large tongue, abdominal wall defects and low blood sugar.

 

Beckwith-Wiedemann Syndrome is a congenial disorder characterized by an increased risk of childhood cancer and certain features including a large tongue, abdominal wall defects and low blood sugar.
Acknowledgement of Beckwith-Wiedemann Syndrome has not been added yet.
7.3http://www.orpha.net
Synonyms for Beckwith-Wiedemann Syndrome has not been added yet.
Cause of Beckwith-Wiedemann Syndrome has not been added yet.
Symptoms for Beckwith-Wiedemann Syndrome has not been added yet.
Diagnosis of Beckwith-Wiedemann Syndrome has not been added yet.
Diagnostic tests of Beckwith-Wiedemann Syndrome has not been added yet
Treatments of Beckwith-Wiedemann Syndrome has not been added yet.
Prognosis of Beckwith-Wiedemann Syndrome has not been added yet.
Tips or Suggestions of Beckwith-Wiedemann Syndrome has not been added yet.
References of Beckwith-Wiedemann Syndrome has not been added yet.
Living with BWS in an infant Created by lotte
Last updated 10 Mar 2011, 11:15 AM

Posted by lotte
10 Mar 2011, 11:15 AM

Hi I have a three month old daughter who has been diagnosed with BWS. he was born with exomphalus which was repaired on Day 1 and also has ear pits on one side and has an enlarged tongue. Our lives are slowly getting back to normal and Charltte is having less and less problems everyday. She still is prone to choking a far hit but that had just become part of our everyday living. The surgeon ensures us she should have no trouble with her bowel s the sac around it protected it in utero. However we have had a bout f gastro this week and her belly was huge, she couldn't even fit in her 2 year old brothers bath seat so back to the doctors we go. The doctors appointments are slowly becoming further apart and now we are seeing respiratory physician, pediatric surgeon, pediatrician, geneticists and the gp. And yes I'm over it.but it must be done. I am really interested in talking to some othe families that also have children with BWS.

Community External News Link
Title Date Link
Early study points to potential therapeutic avenue for a pair of rare pediatric diseases 02/13/2021
Community Resources
Title Description Date Link

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

39 yrs old male with bws and gigantism looking to talk and maby meet someone with this Also, never met anyone with either...
i had niece and nephew who had hurlers syndrome unfortunately the both died in childhood i am interested in rare syndromes
Hi My name is Vanessa and I have a baby girl Charlotte who has been diagnosed with Beckwith Weidemann Syndrome
I work with a charity in Australia that provides support to families with rare genetic conditions, The Association of Genetic Support of Australasia (AGSA). I would like to use this site so that I...
i have b.w.s
i have 3 boys one wtih beckwidth wiedeman syndrome and one with a extra chromesome 14 mosiac and not last but least one that is perfectly normal as normal goes. ages 5, 7, 12. my twelve year old is...
Parent
My daughter was born in 2009 with Beckwith-Wiedemann Sydrome

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Living with BWS in an infant

Created by lotte | Last updated 10 Mar 2011, 11:15 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.