Parents Group

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The Parents Group at the NGF Conference, November 1994, was attended by about 20 parents, writes Susan Noe. Their children ranged from small babies upwards but teenagers were best represented. Most of the children were on Ceredase, one on Cerezyme.

The children's clinical and physical responses to therapy were the main points of discussion. Everyone was delighted to see their children gain new energy, become less anaemic and generally less disabled.

The subject of sport was brought up. It was generally agreed that contact sports were the only ones to be avoided and most children are happy to participate in gymnastics, tennis and especially swimming.

Most parents were concerned about the psychological effects of long term treatment. Some teenagers who had been on Ceredase for 4 years or longer were beginning to resist treatment. We discussed strategies to encourage them not to stop such as home therapy and learning to do it themselves. Some children were receiving support from a psychologist.

All parents agreed that often they were more informed about Gauchers than many doctors. Some people had had problems during emergencies because the doctor on duty had no experience of the disease.

Changes in family dynamics were discussed concentrating on sibling rivalry and the manipulative skills that these children develop.

It was reassuring to find most parents had the same problems but the general feeling was positive - Ceredase works and our children are getting better.

Source: Gauchers News February 1995
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