The word "lupus" is Latin for "wolf." Back in the 1850's, physicians believed the rash that appears on the face of lupus patients resembled the bite-mark of a wolf. "Erythematosus" is Latin for "red." The analogy to a wolf is an apt one: the wolf is a habitual creature (there is no cure for lupus), and it can sneak up on you and attack (you can feel great one minute and terrible the next).
What is Lupus?
Lupus is an autoimmune disease - which means that the child's immune system
has created "auto-antibodies" - and the immune system has begun
to fight against the child's own body: organs, blood, bones and joints,
and connective tissue. In children's words, the immune system is "confused"
- it's supposed to protect you, but instead it's attacking you.
The immune system
fights by inflammation. With internal inflammation, there may be no visible
signs. If vital organs are repeatedly inflamed, irreversible damage can
occur. When it becomes necessary to suppress the immune system, the child
is susceptible to secondary conditions that can seriously complicate the
picture
There are more people with lupus than there are with leukemia, cystic fibrosis, and multiple sclerosis combined, yet lupus receives less than 10% of the medical research dollars these better-known diseases receive. Unfortunately, there is no cure for this disease. (From The Lupus Book, by Daniel Wallace)
What does it feel like?
Think of how your thumb
might feel with an infection - it would be painful, swollen and possibly
throb - it would be difficult to ignore. Now imagine that many parts of
your body feel like that thumb - all at the same time. Now imagine that
you are a child, and you have a better idea of the obstacles families
might face. Unless the child has the telltale facial redness or rash,
they might appear perfectly healthy, while feeling like they've got a
really bad case of the flu (fever, headache, joint pain, fatigue, nausea)...
in a word, yukky.
It's been said that having lupus is like having a full-body transplant... and your body is rejecting the transplant.
What's next?
When a child is diagnosed
with lupus, the entire family's world can turn upside down. My daughter
was diagnosed with lupus at age 12. The information contained on this
site is information I have learned during my quest to return some normalcy
to our family life. I hope this site will help give you the support and
information you need to learn how to cope with the wolf.
