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Two sessions were devoted to children with Type 1 Gauchers disease and their parents, at the Workshop. Gill Ian mother of a Type 1 boy diagnosed aged 6 years and now 15, facilitated the groups. Dr Ed Wraith paediatric consultant in the charge of the Gauchers Centre at the Royal Manchester Childrens Hospital, participated in the first session. Gill reports:
British summer time began and heralded an early start to the workshop. Initial confusion on the docklands light railway and wrong turns in Camden to find the location of the workshop did not portent well for the day.
However the Ort Centre was the place where confusion and unsureness was replaced by straight talking and ease of understanding, excellent networking and a strength of knowing once again the supportiveness of the Gauchers Association.
The first workshop was with Dr Wraith. Existing communication between doctors with their patients and families, and the need to extend this, was the theme that ran through the session.
Dr Wraith spoke about the 14 children with Gauchers disease he saw at his clinic and stressed the importance of communication between local doctors who saw children on a day to day basis and the Gauchers Centres where advice can be given on all aspects of the disease.
Dr Wraith described the national database, part of the Department of Health directive, which was being set up to pool information about all the patients at the four Gauchers centres on an anonymous basis. This would enable better comparisons and future treatments.
Other topics discussed were:
Transferring from Ceredase to Cerezyme
Latest innovations including modern portocaths (a device which is permanently placed into a vein under the skin of the chest to enable easier infusions)
Enzyme replacement therapy in different countries
Transition of dependant child to responsible adult
All the participants in this session benefited from the up to date and clear information offered by Dr Wraith and the opportunity of networking with eachother on site!
Parents collected together and shared their common feelings, anxieties and hopes: these travelled parenting years from the first discovery trauma, through to finding supportive and understanding medical expertise, to letting go of the responsibility for the growing adult.
It felt good to be part of a group that shared their personal and common experiences.
Personally I found the day to be of great value. It seemed to offer at a grass roots level a wide ranging choice of opportunities to learn and become equal partners in the mastery of Living with Gauchers in 1998.
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Source: Gauchers News July 1998
© Copyright Gauchers Association 1998