Multidisciplinary Macroglossia Service for children with Beckwith-Wiedemann Syndrome

This is a national specialised service for children who have macroglossia associated with Beckwith Wiedemann Syndrome (BWS macroglossia) and is located at Great Ormond Street Children’s Hospital NHS Foundation Trust (GOSH).

The GOSH service is embedded in multi-professional evidence based practice. The service aims to prevent or resolve the problems associated with macroglossia in BWS in a timely way and to provide best current practice This includes difficulties with feeding and speech, the position of the teeth and lower jaw, increased drooling and altered facial appearance and in some cases respiratory problems.There is no other centre within the UK seeing a large volume of patients with BWS macroglossia and providing long term coordinated care.

The email address for the GOSH BWS with Macroglossia service is: GOSH.BWS@gosh.nhs.uk

Link for this service:

http://www.gosh.nhs.uk/health-professionals/clinical-specialties/speech-and-language-therapy-information-for-health-professionals/services-we-provide/multidisciplinary-macroglossia-service-for-children-with-bws/

Link for Information on tongue reduction surgery at GOSH:

http://www.gosh.nhs.uk/medical-conditions/procedures-and-treatments/tongue-reduction-surgery

 

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