Living With Sickle Cell Anemia
If you or someone in your family has sickle cell anemia, you may need help handling the stresses of coping with this lifelong disease. Your doctor can talk with you about your concerns. Sickle cell centers and clinics also can provide information and counseling. Many areas have sickle cell support groups for families affected by the disease.
It's especially important to find ways to control — and cope with — pain. Different techniques work for different people, but it might be worth trying heating pads, hot baths, massages or physical therapy. Prayer, family and friends also can be a source of support.
If you have a child with sickle cell anemia, the best way to help is to learn as much as you can about the disease and to make sure your child gets the best health care possible. A child with sickle cell disease has special needs and requires regular medical care to stay as healthy as possible. Your doctor can explain how often to bring your child for medical care and what you can do if he or she becomes ill.
You may also want to let teachers and caregivers know about your child's illness. Help them understand what kinds of exercises and situations can be harmful to your child, and teach them to recognize signs of infection. Having other people help care for your child is good for your child — and good for you.
Coping skills
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.
If you or someone in your family has sickle cell anemia, you may need help handling the stresses of coping with this lifelong disease. Your doctor can talk with you about your concerns. Sickle cell centers and clinics also can provide information and counseling. Many areas have sickle cell support groups for families affected by the disease.
It's especially important to find ways to control — and cope with — pain. Different techniques work for different people, but it might be worth trying heating pads, hot baths, massages or physical therapy. Prayer, family and friends also can be a source of support.
If you have a child with sickle cell anemia, the best way to help is to learn as much as you can about the disease and to make sure your child gets the best health care possible. A child with sickle cell disease has special needs and requires regular medical care to stay as healthy as possible. Your doctor can explain how often to bring your child for medical care and what you can do if he or she becomes ill.
You may also want to let teachers and caregivers know about your child's illness. Help them understand what kinds of exercises and situations can be harmful to your child, and teach them to recognize signs of infection. Having other people help care for your child is good for your child — and good for you.
Coping skills
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.
Introduction
Causes
Children
Clinical Trials
Complications
Coping skills
Diagnosis/Symptoms
Dictionaries/Glossaries
Directories
Genetics
Journal Articles
Key points
Latest news
Law and Policy
Organizations
Prevention/Screening
Related Issues
Research
Risk factors
Self-care
Sickle Cell Disease and Stroke
Statistics
Teenagers
Treatment
Causes
Children
Clinical Trials
Complications
Coping skills
Diagnosis/Symptoms
Dictionaries/Glossaries
Directories
Genetics
Journal Articles
Key points
Latest news
Law and Policy
Organizations
Prevention/Screening
Related Issues
Research
Risk factors
Self-care
Sickle Cell Disease and Stroke
Statistics
Teenagers
Treatment
© 2007 Everything Sickle Cell
Website by
Designs by Mapillar
Many thanks to VodaHost for this FREE DOMAIN
Website by
Designs by Mapillar
Many thanks to VodaHost for this FREE DOMAIN
Disclaimer: Information on this web site is provided for informational purposes only and is not a substitute for professional medical advice. You should not use the information on this web site for diagnosing or treating a medical or health condition. You should carefully read all product packaging. If you have or suspect you have a medical problem, promptly contact your professional healthcare provider.
Article courtesy of
