Family Day at the Royal Manchester Children's Hospital

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On Friday 10 July 1998 the Royal Manchester Children's Hospital also held a Family Day. The 14 children who attend the Gauchers Clinic there had been invited. Melanie Lipson our Manchester Representative reports:

The day began at 10am with coffee and registration. Dr Ed Wraith, who is in charge of the Gauchers Clinic, gave a welcome speech. Several topics were discussed as well as the subject of having a Portocath fitted. This device is surgically implanted under the skin directly into a vein which allows easier access for enzyme replacement therapy in children. However an extra procedure and even stricter hygiene must take place during infusions.

After lunch, appointments had been made for the children to see Dr Wraith. Meanwhile Dr Alan Cooper, the principal biochemist, gave a tour of his laboratory and gave an interesting talk about Gauchers disease.

During the afternoon,there was an opportunity to meet nurses from Healthcare at Home, the company which dispenses and distributes Cerezyme. I felt the day was worthwhile. Everyone was very pleasant and informative and I am sure that the patients who were there will have benefited as well. Lorraine Burnett, the clinical nurse specialist attending the Gauchers Clinic, said that they planned to have a Family Day once a year and she hoped more families would attend in future.

Family day in London

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Source: Gauchers News January 1999

© Copyright Gauchers Association 1999