Clare.T
10-06-2004, 06:14 PM
Welcome to parents of children and young people with lupus. We hope you will find the information and support here, that is so hard to come by.
It seems that 4.5% of those with lupus are paediatric cases. Dr Hughes of the London Lupus Centre thinks the number of paediatric cases is actually increasing, not just more often being diagnosed.
Being the parent of a child with lupus can be even more lonely than it is for the adult sufferer and the contact with others with similar experiences can make all the difference to coping with the difficulties experienced.
There are special concerns for young people whose education and emotional and social development may be seriously affected and so their long term prospects in life employment opportunities and relationships
Management of the young person with lupus at home raises special problems especially in the teenage years.
The parents have to be their child's fully informed advocate to ensure the best treatment and minimise the effects that having the disease can have on the child and the whole family. The experience can be quite overwhelming
Parents may themselves need help in dealing with their own emotional and psychological responses to having a child with a chronic potentially disabling illness and the effects on spouse and family dynamics as well as all the adjustments that need to be made.
The good news is that although children tend to have more serious illness they respond better to treatment.
We hope this forum will make life easier for the parents and thus help the child's optimum recovery.
Live in hope
Clare
It seems that 4.5% of those with lupus are paediatric cases. Dr Hughes of the London Lupus Centre thinks the number of paediatric cases is actually increasing, not just more often being diagnosed.
Being the parent of a child with lupus can be even more lonely than it is for the adult sufferer and the contact with others with similar experiences can make all the difference to coping with the difficulties experienced.
There are special concerns for young people whose education and emotional and social development may be seriously affected and so their long term prospects in life employment opportunities and relationships
Management of the young person with lupus at home raises special problems especially in the teenage years.
The parents have to be their child's fully informed advocate to ensure the best treatment and minimise the effects that having the disease can have on the child and the whole family. The experience can be quite overwhelming
Parents may themselves need help in dealing with their own emotional and psychological responses to having a child with a chronic potentially disabling illness and the effects on spouse and family dynamics as well as all the adjustments that need to be made.
The good news is that although children tend to have more serious illness they respond better to treatment.
We hope this forum will make life easier for the parents and thus help the child's optimum recovery.
Live in hope
Clare