Lupus and Teenagers
When your teenager has been recently diagnosed with lupus, you will want to learn about the disease, its treatments, and what to expect in the future, as well as coping strategies that will help your teenager and your family.
What is Lupus?
Lupus is an autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body such as the kidneys, lungs, or heart). Although many different parts of the body can be affected, sometimes only one or two organs or organ systems will be involved. Lupus is the same disease in adolescents as it is in adults.
Health Care Providers
Until approximately age 18, teenagers with lupus are usually treated by a pediatric rheumatologist (a specialist in the musculoskeletal system and some autoimmune diseases) or immunologist (a specialist in diseases of the immune system) who is familiar and comfortable with the special needs of young people. If you need help finding this type of doctor in your area, call the LFA toll-free at (800) 558-0121.
After age 18, teenagers with lupus usually switch to seeing an adult rheumatologist. However, some pediatric centers prefer to continue seeing teenagers through their college years—ideally until medical coverage is provided through an employer—to prevent any lapse in health care.
Lupus is a systemic disease, which means it can cause complications in many parts of the body. There may be times that your teenager needs to see a kidney specialist, a heart specialist, or other health care professionals. The team approach—which includes the teenager!—is the most successful way to manage lupus. It is advisable that one of these doctors—usually the rheumatologist—serves as the team leader.
There are many symptoms of lupus, some invisible and some very visible. These symptoms can be of great concern to your teenager, especially those that cause a change in appearance, such as hair loss, a bloated look in the face and neck, skin rashes or lesions (sores), weight gain, and easy bruising. These effects may be caused by lupus or by the medications used to treat the disease. Some of these will diminish or go away entirely when lupus symptoms are controlled by the medication, and also as the dosages of medications are lowered and discontinued. When present, though, these visible symptoms of lupus can be upsetting to your teenager.
Symptoms that are invisible—muscle aches, joint pain, severe fatigue, chest pain, memory loss, and difficulty processing information—can also be difficult to deal with. There may be times when people ask you or your teenager questions about why such a healthy-looking young person walks with a cane or does not participate in a school activity or needs a home tutor. Be patient as you help your teenager learn to cope both with these effects of the disease, and other people’s reactions and attitudes.
Flares and Triggers
Lupus is characterized by periods of disease activity, known as “flare” or “flare-up,” and periods when the disease is quiet (inactive), known as “remission” or “quiescence” (kwy-es-ents). Many environmental factors can cause, or “trigger,” lupus to become active. A flare can range from mild to severe, and each person will experience different triggers.
Some common triggers are:
- excessive exposure to ultraviolet rays—from the sun or from artificial light (such as a tanning bed or fluorescent overhead lights)
- a viral or bacterial infection
It is very helpful to know what environmental factors most affect your teenager so that lupus flares can be avoided.
Many medications are used to treat the symptoms of lupus; however, most are used off-label, meaning that doctors have found the medication helpful for people with an illness or condition other than the one for which is was approved by the Food and Drug Administration (FDA). For more information on treatments for lupus, please refer to the LFA Patient Education Series booklet, Treating Lupus.
The medications currently approved for treating adults with lupus are: aspirin; antimalarials, such as Plaquenil®; corticosteroids, such as prednisone; and the biologic antibody Benlysta® (belimumab), approved in 2011.
Because lupus is different for each person, it can take some time before your teenager’s doctors find the right combination of medicines to keep lupus under control. It is especially important for your teenager to be aware of possible medication side effects, because sometimes these can cause additional health complications.
Teenagers may face difficulties in taking prescribed medications correctly and regularly. Together you can design strategies that help your teenager stick with the treatment plan. Especially when your teenager is feeling well, it’s important to reinforce that inactive disease is a result of the medication and that the medication must continue for the long term. Encouraging a talk with the doctor or the doctor’s nurse may be useful.
It is very important for people with lupus to avoid infections and illnesses. This is because the medications that treat lupus reduce the normal activity of the immune system. Also, lupus itself increases the risk for infections to occur. Encourage your teenager to wash his or her hands frequently, and to try to avoid classmates and friends who are sick.
Individuals with lupus should not receive any vaccine that contains “live” virus. This is because even a small amount of a virus can cause lupus to become active.
For the most current vaccination recommendations for teenagers with immune system complications, such as lupus, go to the Vaccines section of the Centers for Disease Control and Prevention Web site at www.cdc.gov/vaccines, or call toll-free 800-CDC-INFO (800-232-4636).
Diet and Nutritional Health
There is no specific diet for people with lupus. However, to improve heart disease risk, reduce inflammation, and lower blood pressure—all of which are very important for people with lupus of any age—encourage your teenager to follow the recommended guidelines for healthy eating.
- Eat plenty of fresh fruits and vegetables, whole grains, and moderate amounts of freshly cooked meats and poultry.
- Eat baked or broiled fatty fish once or twice a week.
- Avoid or limit foods containing saturated fat, hydrogenated or partially hydrogenated fats, or trans fats.
- Limit daily sodium intake, especially from processed and “fast” foods. (When eating out, request low-sodium preparations.)
- Drink plenty of water (if there is no fluid restriction).
- Avoid or limit sugary foods and drinks.
Lupus, as well as many of the medications used to treat lupus, can cause loss of bone minerals, such as calcium. When these minerals are not at correct levels, bones may not be able to grow normally, and may not have normal bone strength. This means that adolescents with lupus are at increased risk for delayed skeletal growth, short stature, and fractures later in life.
Additional risk factors for low bone mass include kidney disease (lupus nephritis), the presence of certain immune cells in the blood, low levels of vitamin D, and reduced ability to be physically active. Your teenager’s doctor should be able to assess these risks and recommend treatment strategies, such as a calcium and vitamin D supplement added to the diet, regular bone density screenings, and weight-bearing and aerobic exercise.
Among the most commonly prescribed medications for lupus are antimalarials. These can affect the retina, so a complete eye examination by an ophthalmologist should be done prior to starting this type of medication and once or twice a year thereafter. Any problems with vision should be immediately brought to the attention of the ophthalmologist. Also, the dosage should be based upon your teenager’s ideal body weight for his or her height.
Although it may seem premature to think about future family planning, some of the medications used to treat lupus can affect fertility, so you and your teenager may want to discuss this with the doctor early on. Young women with lupus also have special needs when it comes to contraception. Your teenager’s doctor will be able to recommend the safest forms of birth control. And, all teenagers should know how to protect themselves from sexually transmitted diseases.
Just as important as physical health is your teenager’s emotional health. As a normal part of growing up, teenagers experience a wide range of physical and emotional changes as they move toward becoming independent adults. When a crisis occurs, such as a diagnosis of lupus, some teenagers may react with expressions of anger, frustration, and/or sorrow. Others may become withdrawn. However they react, teenagers, like all of us, will deal with a lupus diagnosis in their own ways.
This is an essential time for you to listen and be as understanding as possible. You may want to consult your teenager’s doctor about the best way to talk to your teenager about lupus. And you may find that honest and open discussion of your feelings will help your teenager to express his or her own feelings.
Having a chronic illness that causes pain and fatigue can make teenagers feel left out of the life that friends and peers are leading. But even though they may not be able to take part in a favorite activity one day, it may be only a temporary setback. Helping teenagers to focus on the many things they can do, rather than what they cannot do, is a good strategy.
Both lupus and the medications used for treating the disease—especially corticosteroids—can cause agitation, changes in mood, and other symptoms. Once the medication dosage is lowered or stopped, your teenager’s usual temperament will likely return.
However, there is a link between lupus and clinical depression. If you find that your teenager is having uncommonly negative feelings or engaging in self-destructive behaviors, arrange an appointment with a mental health professional. If your teen is reluctant to go, explain that sharing feelings with an objective listener can help put things into perspective, and will make both of you feel better.
Family and Friends
Lupus affects the entire family. Educating the whole family about lupus and the particular needs of your teenager can help make everyone feel more at ease. You may also find it useful to educate your neighbors and friends.
You may spend a lot of time with your teenager with lupus, due to doctor appointments, treatment needs, sick days, etc., but be sure that your other children, your spouse, and all caregivers—including yourself!—are not neglected. Remember that each family member needs their own space, their own activities, and the opportunity to express their feelings. Regular family meetings are an ideal way to bring problems out into the open and to come up with solutions that work for all of you. Also, the Family Medical Leave Act allows you to take time off work to care for a sick child, but still receive health insurance benefits from your employer; find out more at http://www.dol.gov/whd/fmla/
Getting the whole family involved in local LFA chapter activities can help teenagers feel like they are doing something constructive about their disease. This can also be a good way for them to meet other teens with lupus. Lupus support groups can be a good way for your family and friends to meet other families living with lupus, learn more about the disease, and explore coping strategies. To find out if your local LFA chapter has support groups for teenagers with lupus, as well as other trustworthy resources for teens, check online at www.lupus.org/chapters or call the LFA National Office.
Internet-based educational materials and resources can be useful as well. Request a list of reliable sites, such as the LFA’s Web site, www.lupus.org, from your teenager’s doctor.
School and Extracurricular Activities
Your teenager’s teachers, school officials, and leaders of organized activities should be made aware of these common issues that affect students with lupus, so that your teenager can have the same educational experience as the other students.
- Changes in concentration and memory. Both lupus and the medications used to treat lupus symptoms can make paying attention in class and completing assignments difficult. Talk to the school guidance counselor about accommodations and services that can be arranged through an Individualized Education Plan (IEP) or a 504 Plan. For example, allowing extra time for homework and test-taking or having a home tutor to help with missed class work can be very helpful. You also may want to ask about having an extra set of books for each class, along with weekly assignments and the instructor’s guide to each subject, to help your teenager keep up with required coursework.
- Reduced ability to participate in physical education classes and after-school sports. When joint pain, extreme fatigue, and/or increased sensitivity to the sun are factors for your teenager with lupus, it may be helpful for him or her to play for a shorter amount of time, switch to a sport that is more physically manageable or is played indoors, or participate in a different way, such as coaching peers or younger players.
- Extreme fatigue and hyperactivity. Lupus itself causes extreme fatigue, while some medications used to treat lupus symptoms can cause hyperactivity. Explaining these effects to teachers will help them understand if your teenager dozes off in class, or has trouble sitting still.
- Altered appearance from medications and/or disease symptoms. Educating teachers and classmates about lupus skin involvement (hair loss, skin rashes, skin lesions) and medication side effects (hair loss, swollen face, easy bruising) is an important and effective way to lessen misunderstandings that can otherwise go unchecked. And, when your teenager is ready to talk about lupus, this can be a personally empowering experience.
- The invisible effects of lupus. People with lupus often look very well, leading observers to wonder what all the fuss is about. A letter from your teenager’s doctor can be invaluable in stressing the need for special accommodations in the school setting.
- Infections. Viruses and germs are a constant concern, especially if lupus prevents your teenager from responding well to vaccinations. Urge your school nurse to alert you and your teenager about classmates who are ill, and encourage your teenager to practice good hygiene at all times. Also, individuals with lupus should not receive any vaccine that contains “live” virus; even a small amount of a virus can cause lupus to become active.
When serious medical conditions occur in teenagers, parents and doctors must begin by making all the decisions. Once the disease is stabilized, however, teenagers need to feel that their opinion is important in the decision-making process. This helps them experience some degree of control over lupus, as well as realize the impact of their choices. The more they understand lupus, the better they will be able to manage living with a chronic illness as they move into adulthood.
Teenagers with lupus should understand the importance of:
- taking medications as directed, even when they feel well
- keeping scheduled doctor appointments
- communicating with members of the health care team, including parents
- having lab tests done as requested
- limiting stress
- getting enough rest
- avoiding too much sun
- recognizing signs of a flare
- not giving up on goals and dreams!
The LFA Patient Education Series which can be found in the “Learn about Lupus” section of the LFA website has information has on a variety of topics that can explain lupus. More information and resources on every aspect of lupus can be found at lupus.org. Also, the archive section of the Lupus Now® magazine Web site, at lupusnow.org, has a column written by and for teenagers, called Teen Talk.
The long-term outcome of a teenager with lupus depends a great deal on which internal organs are affected and the success of treatment in stopping tissue damage. Equally important, however, are a good understanding of lupus, recognition of when a flare is beginning, adherence to doctor’s orders, and good lifestyle choices. With these in place, your teenager with lupus can look forward to a full and rewarding life.
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