
Posterior urethral valves (PUV)
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PUV is often diagnosed by a routine ultrasound scan during pregnancy if the bladder, ureters or kidneys are swollen. It can also be diagnosed in a newborn baby if the bladder is swollen and urine dribbles constantly. Information and support for parents and parents-to-be who have a son diagnosed with this condition appears to be very limited. We have found a good Factsheet produced by Great Ormond Street Hospital which you can access at www.gosh.nhs.uk and the following organisation may be able to put you in touch with another family in a similar situation:
Contact a Family is a charity for families with disabled children. They have information on hundreds of medical conditions, many of them rare syndromes. They also have information on national and local support groups and on topics such as benefits and education. Contact a Family Tel: 020 7608 8700 Fax: 020 7608 8701 Minicom: 020 7608 8702 Helpline: 0808 808 3555 Freephone for parents and families (10am-4pm, Mon-Fri) Email: info@cafamily.org.uk
If anyone is aware of a PUV Support Group in the UK or abroad please let us know via contributions@forparentsbyparents.com
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