|
With good health care,
many people with sickle cell anemia can live
productive lives, have reasonably good
health much of the time, and live longer
today than in the past. Many people who have
sickle cell anemia now live into their
forties or fifties, or longer.
If you have sickle cell
anemia, it’s important to take good care of
yourself, do what you can to prevent sickle
cell crises, and get regular medical care.
Find out all you can about your condition
and learn what signs to watch out for.
To take care of your
health, you should maintain healthy
lifestyle habits. These include:
Eating healthy. Your
doctor also may recommend a vitamin (folic
acid) to take every day to help your body
make new red blood cells.
Drinking at least 8
glasses of water every day, especially in
warm weather.
Exercising regularly,
but not to the point that you become very
tired. Drink lots of fluids when you
exercise. Talk with your doctor about how
much exercise is right for you.
Getting enough sleep
and rest. Tell your doctor if you think you
may have a sleep problem such as snoring or
sleep apnea (a condition in which you stop
breathing for short periods during sleep).
Limiting the amount of
alcohol you drink.
Quitting smoking.
Along with healthy
lifestyle habits, there are some things you
can do to help prevent a sickle cell crisis:
Contact your doctor if
you have any signs of an infection, such as
a fever or trouble breathing. Get treated
right away. You may want to avoid
decongestants, such as pseudoephedrine, that
can constrict blood vessels.
Avoid extremes of heat
and cold. Wear warm clothes outside in cold
weather and inside of air-conditioned rooms.
Don’t swim in cold water or climb at high
altitudes without extra oxygen.
Reduce the stress in
your life. Talk to your doctor if you’re
depressed or having problems on the job or
with your family. Support from family and
friends as well as a support group can help
you cope with daily life. If possible, don’t
seek jobs that will require strenuous
physical labor, expose you to extremes of
heat and cold, or involve long work hours.
Don’t travel in
airplanes where the cabin isn’t pressurized
(that is, no extra oxygen is pumped into the
cabin). If you must travel in such an
airplane, talk to your doctor about how to
protect yourself.
Regular medical
checkups and treatment are important.
Checkups may include
tests for possible kidney, lung, and liver
diseases as well as any side effects from
medicines you take. See a sickle cell anemia
expert regularly.
Learn the symptoms of a
stroke and report them to your doctor
promptly. Symptoms of stroke can include a
lasting headache, weakness on one side of
the body, limping, or a sudden change in
speech, vision, or hearing. A change in
behavior also can be a symptom of a stroke.
Get a flu shot and
other vaccinations to prevent infections.
See your dentist
regularly to prevent infections and loss of
teeth.
See an eye doctor
regularly to check for damage to your eyes.
Get treatment and
control any other medical conditions you
might have, such as diabetes.
Talk with your doctor
if you’re pregnant or planning to become
pregnant. You will need special prenatal
care. Sickle cell anemia can become more
severe during pregnancy, with more painful
crises. Women with sickle cell anemia also
are at an increased risk for an early birth
or a low-birth-weight baby. You can have a
healthy pregnancy with early prenatal care
and frequent checkups.
Coping With Pain
Pain is different for
each person. Pain that one person can live
with is too much for another person. Work
with your doctor to make a pain management
plan that works well for you. It may include
both over-the-counter and prescription
medicines. Talk with your doctor about how
to safely use narcotic pain medicines.
Other ways to manage
pain include using a heating pad, taking a
hot bath, resting, or getting a massage.
Physical therapy might help to relieve your
pain if it can help you relax and strengthen
your muscles and joints. Counseling and
self-hypnosis may help. Also helpful are
activities that keep your mind off the pain,
such as watching TV and talking on the
phone.
Caring for a Child With
Sickle Cell Anemia
If your child has
sickle cell anemia, you should learn as much
about the condition as possible. This will
help you recognize early signs of problems,
such as fever or chest pain, and seek early
treatment. Sickle cell centers and clinics
can give you information and counseling to
help you handle the stresses of coping with
this serious, chronic condition.
Frequent Doctor Visits
Your child will need to
see the doctor often for blood tests and to
be checked for any possible damage to his or
her lungs, kidney, and liver. It’s
recommended that before age 2, children with
sickle cell anemia see the doctor every 2 or
3 months. After age 2, children may need to
see the doctor at least every 6 months.
Talk to your child’s
doctor about your child’s treatment, how
often the doctor should see the child, and
the best ways to help keep your child as
healthy as possible.
Preventing Infection
Call your child’s
doctor if your child has a fever or if you
notice any signs of infection, such as
trouble breathing. Keep a thermometer on
hand, and know how to use it. Call a doctor
if your child has a temperature above 101
degrees Fahrenheit (38.5 degrees Celsius).
To prevent infection, most children will be
given:
Daily penicillin up to
age 5.
A flu shot every year
after 6 months of age.
A regular vaccination
against pneumonia. (This also is given to
children who don’t have sickle cell anemia.)
Children with sickle cell anemia also get
two doses of a stronger pneumonia
vaccination after 2 years of age. Doses of
this stronger vaccination are given several
years apart.
Vaccination against
meningitis after the age of 2.
Preventing a Stroke
Ask your doctor whether
your child needs regular ultrasound scans of
the head. Knowing the signs and symptoms of
a possible stroke is important. These
include a lasting headache, weakness on one
side of the body, limping, or a sudden
change in speech, vision, or hearing. It
could even include changes in behavior.
Find Out When To Call
the Doctor
Ask your child’s doctor
what you should report to him or her right
away. For example, you may be asked to call
the doctor right away if your child has any
signs of a stroke or infection. You may be
told to call the doctor if your child has:
Swelling of the hands,
feet, or stomach
Skin or nail beds that
are suddenly pale or skin or eyes that have
a yellow color
Sudden fatigue
(tiredness) with no interest in his or her
surroundings
Erection of the penis
that won’t go away
Pain in the joints,
stomach, chest, or muscles
School-aged children
can often—but not always—take part in
physical education or sports, but only after
approval of the child’s doctor. Ask your
doctor about safe levels of exercise for
your child.
Caring for a Teen With
Sickle Cell Anemia
Just as with any
chronic condition, teens who have sickle
cell anemia must manage their condition
while dealing with the stresses of the teen
years—peer pressure, sexuality,
independence, education, and career goals.
Specific stresses faced by teens with sickle
cell anemia include:
Body-image problems
caused by a delayed sexual maturity
Coping with pain and
fear of addiction from using narcotic pain
medicines
Living with
uncertainty, because sickle cell anemia is
unpredictable and can cause pain and damage
to the body at any time
Ways to support teens
with sickle cell anemia include teen support
groups and family and individual counseling.
|
