Chantelle was having a rough morning. Her hands were so stiff
that she could barely dial the combination on her locker. Then she
couldn't move her fingers well enough to play her clarinet. It
seemed that ever since marching band practice had started in the
early summer, her hands and feet felt sore in the mornings. She was
also tired all the time, and no matter how much she rested, she
still felt sleepy and achy all over.
Chantelle told her doctor about her achy hands and feet and how
she felt tired all the time. The doctor sent her for blood tests. A
few days later, the doctor called and told Chantelle's dad that
she might have lupus.
What Is Lupus?
Lupus (pronounced:
loo
-pus) is a disease that involves the immune system and affects
about 1.5 million Americans; nearly 90% of those diagnosed with the
disease are female. Normally, a person's immune system works by
producing immunity cells and
antibodies
, special substances that fight germs and infections.
But when a person has lupus, the immune system goes into
overdrive and can't tell the difference between some of the
body's normal, healthy cells and germs that can cause
infection. So the immune system responds by making
autoantibodies
that attack the body's normal cells.
The three types of lupus are:
1. Systemic Lupus Erythematosus
(pronounced: er-uh-thee-muh-toe-sus)
Also called SLE, this is the type of lupus that most people mean
when they talk about the disease. It was given its name by a 19th
century French doctor who thought that the facial rash of some
people with lupus looked like the bite or scratch of a wolf
("lupus" is Latin for wolf and "erythematosus"
is Latin for red).
SLE is the most serious form of lupus. Like Chantelle, about 15%
of the people who have SLE first start to feel sick when they are
teens. SLE can affect the skin, joints, and tendons. It may also
affect organs like the brain, heart, lungs, and kidneys.
2. Discoid
(pronounced: dis-koyd)
Lupus
This type of lupus is a skin disease that causes a rash on the
face, neck, scalp, and ears. It is a much more rare form of lupus
than SLE, although about 10% of people with discoid lupus will
develop a mild form of SLE. It doesn't affect other body organs
the way that SLE can. The rash of discoid lupus can cause scarring,
though.
3. Drug-Induced Lupus
This type of lupus is caused by a reaction to certain kinds of
medicines. For example, some types of antiseizure medicines and
acne medicines can cause this kind of lupus in teens. Drug-induced
lupus is similar to SLE in the ways it affects the body, but once a
person stops taking the medicine, the symptoms usually go away.
What Causes Lupus?
No one really knows what causes lupus. Researchers think that
some people may be more likely to get it due to things that are out
of their control, like:
-
gender:
Many more women get lupus than men; there are 10 women to every
one man with lupus.
-
estrogen:
This female
hormone
may be a factor in lupus - almost all women who get lupus are of
childbearing age.
-
race/ethnicity:
Lupus occurs more often in African-American, Asian-American,
Latin-American, and Native-American women than in non-Hispanic
Caucasian women.
-
family history/genetics:
About 10% of people with lupus have a family member with
lupus.
-
major
stress
or infection:
If people have the genetic tendency to get lupus, extreme stress
or an infection may trigger the disease - but the blueprint for
lupus has to already be there. One thing researchers know about
lupus is that it is not contagious. You can't catch any of
the three types of lupus from another person. And although lupus
involves the immune system, it is not the same as other diseases
that involve the immune system, like
AIDS
.
Symptoms of Lupus and How It Is Diagnosed
Lupus can be hard to diagnose because its symptoms can vary from
one person to the next. The symptoms can also make lupus look like
certain other diseases. For example, like Chantelle, people with
lupus may feel weak and fatigued. They may have muscle aches, loss
of appetite, swollen glands, and hair loss. Sometimes they have
abdominal pain, nausea, diarrhea, and vomiting.
The doctor may perform certain blood tests when lupus is
suspected and will probably send the person to a
rheumatologist
(pronounced: roo-muh-
tol
-uh-jist). Rheumatologists are doctors who have special training in
diagnosing and treating autoimmune diseases like lupus.
Because signs and symptoms of SLE can be so varied, a
rheumatologist will look for 11 specific signs:
-
malar rash:
A malar (pronounced:
may
-lur) rash appears across the nose and cheeks in the shape of a
butterfly.
-
discoid rash:
This rash features round, red, scaly patches that can appear on
the face, arms, scalp, or ears.
-
photosensitivity:
This means sensitivity to ultraviolet rays, like the ones that
come from the sun or from fluorescent lights. Most people with
SLE are photosensitive and find that the sun worsens their
lupus.
-
ulcers in the nose or mouth:
These usually don't hurt and many people with SLE don't
even know they are there.
-
arthritis:
This makes joints hurt, especially in hands and feet. Unlike the
kind of arthritis that older people sometimes get, this arthritis
doesn't damage the bones. Most people with SLE have some
degree of arthritis.
-
serositis
(pronounced: sir-o-
syte
-us)
:
This is the collection of fluid near the linings covering the
heart, lungs, or abdomen.
-
kidney problems:
These can be mild or severe. Most people with SLE will have
kidney problems, but only about half of them will have permanent
kidney damage.
-
neurologic problems:
This refers to problems with the brain and nervous system, like
seizures.
-
blood problems:
SLE can cause a lower than normal number of red blood cells
(anemia), white blood cells, or platelets.
-
immune system problems:
Blood tests may show that the immune system isn't functioning
properly.
-
positive ANA test:
This is a blood test that shows a certain type of antibody. About
95% of people with SLE have a positive ANA test.
Someone with
four or more
of these signs or symptoms is likely to have SLE. Most
patients don't develop all 11 of them.
Treating Lupus
The type of treatment someone gets often depends on how severe
the lupus is and which body systems are affected. Almost all people
with SLE take some kind of medicine to help control their lupus.
Patients whose joints hurt often take acetaminophen (such as
Tylenol) or ibuprofen (such as Advil or Motrin) to help with the
pain.
Others take antimalarial drugs (medicines first developed to
prevent and treat malaria, but that have also been found to help
treat lupus). Antimalarial drugs often help treat skin rashes and
joint pain.
Some rheumatologists prescribe anti-inflammatory steroids,
medicines that help fight the fatigue and fever that can affect
people with SLE. People with lupus that affects important body
organs may be given other immunosuppressive drugs. These drugs help
stop the immune system from producing the autoantibodies that
destroy healthy cells. These drugs are very strong, though, and can
have side effects. So they are used only when it's really
necessary.
Living With Lupus
In addition to taking medicine, a big part of treating lupus may
involve lifestyle changes. For a lot of people with lupus, paying
close attention to certain health habits can help prevent their
symptoms from flaring up. Getting enough rest and avoiding becoming
too busy or overly stressed are helpful. Eating well and exercising
regularly can also help a person avoid a flare.
People with lupus can learn to manage the disease to minimize
its impact on their lives. Some teens work with a health care team,
getting help from a rheumatologist, a nephrologist (a doctor who
specializes in kidney problems), a nurse practitioner, and a social
worker. Because lupus can differ from one person to another, the
team will create a special treatment plan based on the person's
individual needs.
Part of managing lupus is controlling the symptoms and
preventing
flares
. A flare is a period of time when the disease gets worse. During a
flare, a person feels much more tired, sick, feverish, and achy
than usual, and it can also harm important body organs.
When it comes to staying healthy, sometimes the things a person
with lupus
doesn't
do can be just as important as those they do. Rheumatologists
recommend that people with lupus don't spend time in the sun
unless they wear lots of sunscreen and protective clothing because
ultraviolet rays can bring on a flare.
Smoking, drinking, and drugs are also a bad idea for teens with
lupus. Alcohol can throw off the balance of certain medications, a
dangerous situation for someone with lupus. Tattooing and body
piercing are also off limits because of an increased risk of
infection. Infection can be a risk because some of the medications
doctors prescribe for lupus suppress the immune system and
don't allow the body to fight infections as it usually
would.
Doctors also advise that teen girls with lupus stay away from
birth control pills containing the hormone estrogen; researchers
believe that the extra estrogen in the pills can make symptoms
worse. Doctors suggest that teens who are sexually active use other
types of
contraception
instead.
With the right medicines and by paying attention to their health
habits, most teens with lupus can go to school, enjoy
many activities, play sports, and hang out with their friends.
If you have a friend or classmate who has lupus, ask how you can
help and offer your support. For example, if your friend is sick,
keeping him or her up to date on what's going on in school by
bringing notes and homework home is always a big help.
Reviewed by:
AnneMarie C. Brescia, MD
Date reviewed: June 2008
Note: All information is for educational purposes only. For specific medical advice,
diagnoses, and treatment, consult your doctor.
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