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Systemic Lupus Erythematosus (Lupus)
in Children and Adolescents
What
about the future?
The first year after the diagnosis can be the hardest. The illness may be most
active; the
medication doses are high; your visits to the doctor and blood tests are
frequent; you may need to be admitted to the hospital for treatment or for
tests.
After the first year, things
often get better, but it can take two to five years for the illness to be
generally less intense and for life to return to a more normal pace. Of course, during all this time your goal will probably be to go to
school every day and do what all your friends are doing. If you are not reaching that goal, your doctor, nurse,
social worker
and even you may have to work harder to realize the goal.
You
deserve to be a major player in your management, but you can only be one if you
understand your illness. You might
consider doing a project on lupus. It
is very interesting and your teacher and classmates would also benefit from
understanding it.
Common sense will
help you get through rough times. You
may ask to meet another young person with lupus, or meet a group of people with
lupus. If there isn't a group, you
could start your own. All you need
is two people to have a group and you may find that discussing your problems
with someone else who also has the disease is very helpful.
This
is not a disease to take lightly, but it is a disease to take on and continue
with life's work despite having it. You
might take it one day at a time. Go
to school, do homework, see friends, and take part in "normal"
activities.
There is no reason to
change your plans for the future. You
can still be whatever you want to be. You
will be able to have a career, get married if you want to, and have a family of
your own. But, you will have to
admit that you have a serious illness which requires your attention. You will need to work out a relationship with your doctor, trust him or
her, and between the two of you, agree on your treatment plans.
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