Tuesday, April 10, 2012

Lupus in children and teenagers

It is hard enough being sick as an adult, so I can only imagine how much more difficult it would be as a child or teenager.  Imagine having to deal with having SLE and peer pressure or bullying at school.  Being young with such a serious illness that the public is not knowledgeable about takes it's toll not only emotionally but physically and mentally as well.  Hopefully with love, understanding and proper medical care children and teens can live a long, happy life.

Approximately 20% of all patients who have SLE are diagnosed in childhood. The onset of SLE is rare in those younger than 5 years of age; most pediatric patients are diagnosed in adolescence. SLE is considered a predominantly female disease, and although most affected patients are female, the ratio changes with age. Prior to puberty, the female-to-male ratio is 3:1; after puberty, the ratio becomes 9:1. Aside from this sex difference, there also are marked racial differences observed in SLE. Native Americans are most susceptible to developing SLE, followed by African-Americans, Hispanics, Chinese, and Filipinos. The disease tends to be more severe in African-Americans and Hispanics.
SLE is a multigenic disease. A patient who has SLE is more likely to have a relative who has either SLE or another autoimmune disease such as thyroiditis or insulin-dependent diabetes. Epidemiologic, twin, and human leukocyte antigen data suggest a strong genetic contribution to the etiology of SLE, but the exact cause is unknown. Multiple factors confer risk, including abnormalities in the metabolism of sex hormones, particular foods that have been found to be immunostimulatory in animals, and infectious agents. Overall, it has been suggested that an environmental trigger is necessary in a …

Childhood Lupus
Is lupus the same in children and adults?

At one time lupus was thought to be more severe in children than in adults, but most physicians no longer believe this. However, children diagnosed with lupus often have been ill for a longer period before the diagnosis is made, and therefore are more likely to have significant internal organ involvement than most adults with lupus. This is because many children are not recognized as having early lupus until the disease has become worse. As a result children with lupus often are required to begin aggressive therapy soon after diagnosis.

The diagnosis

The first step for every family is to be sure the diagnosis is correct. Lupus is a highly variable disease. Some children have obvious disease symptoms with fever, rash, and kidney involvement. Others may complain of not feeling well, or of being tired orachey.Some children may look fine, but may have blood in their urine or other unseen problems that lead their physicians to make the diagnosis of lupus. Although a positive ANA is generally required to make the diagnosis, there are many children with positive ANAs who do not have lupus.

Most physicians rely on the American College of Rheumatology criteria for the diagnosis of definite lupus. It is important to be aware of these. However, some physicians assume anyone who does not fulfill four of the criteria could not have lupus. Especially in children, it is important to remember that more problems may develop over time.

Once the diagnosis is established parents are immediately concerned about what will happen to their child. While lupus can be a severe and life-threatening disease, many children with lupus will do very well. The prognosis of lupus in childhood depends on the severity of the internal organ involvement. Children with significant kidney or other internal organ disease require aggressive treatment. Children with mild rash and arthritis may be easily controlled. However, lupus is unpredictable and no one will be able to predict with certainty the long-term outcome for a specific child. Success in every endeavor is a combination of hard work and good luck. None of us can control good luck. This pamphlet is intended to help you get the best outcome for your child by explaining to you the importance and nature of the hard work.

Following doctor's orders

Compliance with physician instructions has been shown to be one of the most important factors in determining outcome for children with SLE. The severity of a child's lupus is determined by many factors which are beyond your control. However, some very important aspects of treatment are within your control. Paying attention to the doctors' instructions can make a major difference in the outcome of this disease—for example, taking medications as directed, having blood or urine tests when requested, keeping scheduled doctor appointments, and following instructions about avoiding too much sun. Children have special needs and it is important that those caring for the child, i.e., parents and medical professionals, understand these needs. It is very important that parents understand about lupus, know the reasons for the prescribed medications, and know what problems to promptly report to the child's physicians. If you have questions, be sure you get answers. A good working relationship with the child's doctor is one of the most important factors in the successful treatment of this disease.

Everybody with lupus is different. However, much of the information and advice for children with lupus is the same as given to adults. You are encouraged to read the other pamphlets available from the Lupus Foundation of America for this information. This pamphlet emphasizes only those aspects of lupus and its treatment which are peculiar to children and young adults.

The treatment

Treatment for childhood lupus is dependent on the degree of severity of the disease. The most important subject for parents of children with lupus is dealing with the side effects of these drugs.

Lupus medications

Treatment for childhood lupus is dependent on the severity of the disease in each case. The most important subject for parents of children with lupus is dealing with the side effects of these drugs. Corticosteroids (e.g. prednisone) and cytotoxic immunosuppressants can have unwanted side effects.
Many children with lupus require dosages of corticosteroids (prednisone) that produce obvious side effects. Weight gain and a "Cushingoid" (rounded face) appearance, acne, unwanted hair growth, and stretch marks are the most obvious. These changes are easily visible and may upset you and your child. Over time corticosteroids contribute to weak bones, poor growth in height, and atherosclerosis (fatty deposits in blood vessels that can affect blood flow), among many other problems.

These side effects can be minimized by keeping the dosage as low as possible, while still maintaining effective control of the disease.

Cytotoxic immunosuppressive drugs are one alternative to high doses of corticosteroids. These drugs are important to the parents of children with lupus because, when used properly, immunosuppressives allow a dramatic reduction in the corticosteroid dosage, often to a level without obvious or severe side effects. This is a major benefit to children because it limits the medical side effects of the corticosteroids and helps to keep children from getting obvious steroid side effects.. However, cytotoxic drugs are not free of risks. Short-term, they carry the risk of damage to the bone marrow that can cause bleeding or make the child unable to fight off an infection. Careful monitoring minimizes these risks.

Cytotoxic drugs also may increase a child's risk of developing certain forms of cancer at some time in the future. In addition, there is evidence that immunosuppressive drugs may interfere with a child's ability to have children in the future. These are scary problems. Doctors must balance the risk of these future problems against the benefits of better control of the lupus and less corticosteroid use. Although these risks scare every parent, we have had many children do extremely well with their lupus, and serious problems from these medications are very rare.

Alternative treatments

Due to fear and frustration, parents may turn to non-conventional treatments, such as herbal “remedies” or “miracle cures.” However, these alternative methods of treatment have not been properly studied for their effects on the human body. They must be subjected to rigorous research studies before they are used, so children are not put in jeopardy. Everyone caring for lupus is committed to finding better alternatives to current therapies. If there was any proof that alternative medications were really helpful for lupus, the Lupus Foundation of America would know and doctors would be quick to use them.

Behavior and responsibility

One of the most difficult problems for every parent is how to let their children “grow up” without letting them take unnecessary risks. This is even harder for parents of children with lupus. The key concept must be, “as normal as possible.” For every decision you face with your child (school trip permissions, friends, a sleepover, etc.), ask yourself, would you let them go if they didn't have lupus? The only big exception is exposure to excessive sunlight, which may make lupus worse. A child with lupus may not be able to go to the beach for the day, or sit out in the sun by the pool. If you are unsure, ask your physician.

Special steps parents should take

One of the most difficult problems for every parent is how to let their children “grow up” without letting them take unnecessary risks. This is even harder for parents of children with lupus. The key concept must be, “as normal as possible.” For every decision you face with your child (school trip permissions, friends, a sleepover, etc.), ask yourself, would you let them go if they didn't have lupus? The only big exception is exposure to excessive sunlight, which may make lupus worse. A child with lupus may not be able to go to the beach for the day, or sit out in the sun by the pool. If you are unsure, ask your physician.

Educating your child

The feeling of being overwhelmed can be very real for both parents and children. However, educating yourself and your child can help to alleviate many of the worries and concerns. How to approach your child depends on your child's age. Of course no two children are the same, but these general guidelines can help.

For children younger than age 10, excessive explanations aren't very helpful. During this period children rely on their parents to “fix everything” and have little sense of responsibility. While your child should know that they have lupus, you don't need to spend a lot of time trying to explain it. They will need to understand that lupus is a disease, and that it's not their fault.. They need to know they didn't get lupus from doing something wrong, that it is not something
wrong, that it is not something they caught from someone, and that they cannot "give" lupus to anyone else.

It is important that your child understands the need to take the prescribed medicine. For older children you can begin to explain the names of the medicines and the doses. For smaller children this isn't helpful. Sometimes well-intentioned parents go to great lengths to explain every detail to their children as if they were small adults. Under the age of 10 this information is often misunderstood and despite the best intentions it may do more harm than good.

For children 10 and older it is important to begin explaining the nature of lupus. The transition from a small child who must simply do what they are told, to a mature self-reliant adult, may be a difficult one under the best circumstances. Thus it is important that children with lupus be allowed to assume a progressively greater role in taking their medications and making choices about their care.

Educating others

In addition to educating yourself, your spouse, and your child, you will rapidly become aware that you have to educate the school teachers and leaders of organized activities in which your child participates. You will have to explain absences for doctors' visits, fatigue, changed appearance, and restrictions in activities. Your doctor and the local Lupus Foundation of America office can be very helpful sources for information in this regard.

You may also wish to educate your neighbors and friends. Not everyone will be aware of what lupus is or how a person gets lupus. You can help them understand that lupus is not contagious, and that a person who has lupus is genetically predisposed to having the disease. Sometimes this can be done by sharing information available by writing or calling the LFA.

Lupus support groups are a good way to help both the parents and the child meet others who have lupus, as well as their families, learn more about the disease, and explore ways to cope.

Is your child angry or depressed?

You must understand that your child will have days when they are upset about having lupus— just as you are upset that they have it! They will be upset about the side effects of their medications and upset about the limitations placed on them because they have lupus. The fact that it's no one's fault doesn't make it better. You must treat your child just as you would if they were angry about anything else. Occasional problems are normal. If these feelings become prolonged you may need to seek professional help. Remember: there is no single solution that will work for everyone.

There is a whole pamphlet dedicated to depression in lupus provided by the Lupus Foundation of America. It is very important that parents recognize if their child is becoming depressed. Children who become depressed about having lupus may stop taking their medication without telling their parents. This can be disastrous. Watch the medicine bottles. Are they getting empty? Are refills needed as often asexpected? Even if you are the one administering the medication everyday, stop sometimes to watch and make sure the pills are being swallowed, not spit out when you turn around. You might be complying with all of the doctor's advice while your child is not. If you discover that your child hasn't been taking the medication, talk about it with them, and be sure to let your doctor know.

It is important to remember that most children hate being sick. Often this hatred will be expressed as hatred of the pills, hatred of the blood tests, hatred of the doctor's visits, and hatred of advice from parents. Frequently this can be dealt with by reasoned discussion and making sure the child knows why they have to do unpleasant things. At some point in this age group they need to understand that doing the wrong thing could make them very sick. Few children in the pre-teen and early teenage group realize their actions may have permanent consequences—that if they do the wrong thing they can't simply “be forgiven and start over.” If you can't work it out with your child, discuss the situation with the child's doctor. Some children may require psychological intervention. Improperly dealt with, a child or young adult's resentment about having lupus may result in risky behavior that can be disastrous.

Don't be afraid to ask the doctor for help if you are having trouble getting through to your child. Not only does having lupus cause psychological problems, but lupus itself may cause problems with thinking. Sometimes a child who is refusing their medicine may need more medicine. It is important to understand the psychological problems, as well as the effects that lupus can have on cognitive (thinking) impairment. If you believe your child needs help, the child's doctor can help you find an experienced psychologist in your community.

Even children who appear to be doing well may have questions they are afraid to ask. Young people in their middle and late teenage years are beginning to think about their life as adults. Children with lupus will wonder if they are going to be able to get married, have kids, and make a living. The answer should always be that you expect them to lead productive lives. Since most children with lupus will live well into adulthood, it is important to make sure they understand the importance of doing all the things necessary to achieve their goals.

Could anyone else in my family develop lupus?

Studies have shown that close relatives of adults and children with lupus are more likely to develop lupus than are individuals randomly selected in the general population. However, the risk is still very small (about 1/50).

As many as one-third of the sisters of a child with lupus may be ANA-positive. Physicians have now had the opportunity to follow groups of sisters for many years. Roughly one in 10 have gone on to develop lupus over a 10-year period; however, this also means nine out of 10 did not. If one of your other children has symptoms which make you think they might have lupus, have them evaluated by your physician.

Remember, a positive ANA does not make the diagnosis of lupus. In the absence of symptoms sufficient to warrant treatment with prednisone, it is appropriate to just carefully follow the ANA-positive sibling and/or mother of a child with lupus. One special situation is when a relative of a child with lupus is placed on one of the drugs associated with drug-induced lupus. Often this can be done safely, but these individuals may develop lupus-like symptoms when placed on certain anti-seizure drugs and anti-tubercular drugs. They should be monitored carefully.

Family studies of children with lupus have also demonstrated an increased frequency of serologic abnormalities in the mothers of children with lupus. Because usually these are healthy mothers without evidence of disease, this was surprising. This finding strongly supports the hypothesis that lupus results from the combination of a genetic predisposition and an environmental exposure. Interestingly, serologic abnormalities in fathers were much less common, but that doesn't mean they don't contribute to the genetics of lupus. It only suggests that expression of those genetics as a serologic abnormality may be influenced by sex hormones.

Related Information
On this web site

On the Internet
Medic Alert Foundation - or call 888-633-4298

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
  • stress
  • exhaustion
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,  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.
Bone Health
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.

Vision Health
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.
Reproductive Health
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.
Emotional Health
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

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 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,, 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!
Additional Information
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 Also, the archive section of the Lupus Now® magazine Web site, at, 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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