lupus |ˈlo͞opəs| noun 
A name given to a collection of autoimmune diseases, in which the immune system becomes hyperactive and attacks normal, healthy cells and tissues. Middle English, from Medieval Latin, from Latin, wolf 

About Lupus.

What is Lupus? (Spanish)

Lupus is a chronic autoimmune condition - a disease of the immune system. Usually, the healthy immune system creates proteins called antibodies which fight off infections. In lupus and other autoimmune conditions, something is wrong with the immune system and instead of just fighting infections, the immune system recognizes parts of the body as foreign and attacks them. Lupus causes the immune system to create auto-antibodies (antibodies against the self) which cause inflammation in the affected parts of the body. Nearly any part of the body can be affected by lupus. The most commonly affected organs are the skin, joints, kidneys, heart, lungs, nervous system and blood cells (white blood cells, red blood cells and platelets).


Why did I get Lupus?

The cause for lupus is not known. Lupus can run in families and the genes you are born with play a role. It is also possible that hormones and certain things you are exposed to (such as ultraviolet light from the sun, certain infections, other environmental exposures) are involved. Having lupus is not your fault or your parents' fault. Lupus is not contagious-no one can "catch" lupus from you. About 1.5 million people in the U.S. have lupus. Females and non-Caucasians are more likely to develop lupus although lupus can affect people of any age, gender, race and ethnicity.


What Can I Expect with Lupus?

It is typical for people with lupus to have times when their lupus is fairly quiet and times of flare (when the lupus is more active). Each case of lupus is unique, so it is difficult to compare your lupus experience with that of another person. While there is no cure for lupus, there are many good treatment.

 As we learn more about lupus through research, these treatments will get even better! Your doctors will determine which treatments are best for you based upon your particular circumstances.

Without treatment, lupus can cause extensive damage to your body and can even cause death. But with good medical care, most people with lupus can lead full lives. It is very important that you see a rheumatologist regularly throughout your life to maintain your health.



All content information in the About Lupus section was developed by Shelia Rittgers and Stacy Ardoin 

Facts about Children and Adolescents with Lupus:

1.5 million people in the U.S. have systemic lupus, approximately 20 percent are children or adolescents. 


Pediatric patients with lupus are two to three more times likely than adults to develop kidney disease, neurologic complications, and hematologic (blood) disease  




 Childhood onset lupus is typically more severe and follows a more serious course than in adults. 

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On March 23, 2010, President Obama signed the Affordable Care Act (ACA) into law in an effort to provide millions of Americans access to health care through affordable health insurance. For children with lupus and their families, several key provisions of the ACA allow for improved health care access, affordability, and coverage. 

What you should know about the ACA:

Insurance companies cannot exclude coverage for pre-existing conditions, including lupus.

Dependents with lupus remain eligible for coverage on parents' policies until age 26.

States must provide Medicaid coverage to young adults who are under the age of 26 years and who have aged out of the foster care system. 

The ACA prohibits insurance companies from dropping individuals for minor or inadvertent application errors. Youth who need continuous or costly care for their lupus need not worry that their health insurance might drop their coverage – this is now prohibited under the ACA. 

Youth with lupus are guaranteed issue and renewal for continuing insurance policies. Even if an individual with lupus frequently utilizes necessary and costly health care services, an insurance company cannot deny coverage or deny renewal of a policy. 

Every individual, whether living with a chronic health condition or presently free of any illness or injury, must have qualified insurance coverage in order to avoid penalties. 

States cannot reduce current Medicaid or CHIP eligibility or make eligibility more difficult for children or families, including children with chronic health care conditions, like lupus. 

A national standard now allows for 5% of a household's income to be disregarded in Medicaid and CHIP eligibility. This streamlines the application process.

Families and children can now fill out one simplified form to determine eligibility for Medicaid, CHIP, and premium tax credits. 

All health plans must now cover certain essential benefits. Key for families and children with lupus is coverage for laboratory services, ambulatory patient services, emergency services, hospitalizations, oral and vision care, preventative and wellness services, including chronic disease management, rehabilitative and habilitation services, prescription drugs, and mental health services.

The ACA eliminates annual and lifetime benefit caps for children and adults. However, insurance companies can still create caps on the number of health visits a youth with lupus has in a given year, i.e., no more than 15 physical therapy visits, one annual eye exam, etc. 

The ACA places special emphasis on coordination of care, and states receive extra federal money if they create a health home individuals who have chronic conditions, including lupus.

Some states participate in the ACA's Medicaid expansion, which allows families and children with lupus to enroll in Medicaid if their income is at or below 133% of the Federal Poverty Guidelines. 

Some families are now eligible for premium tax credits to help purchase health insurance on the exchanges and cost-sharing subsidies to reduce out-of-pocket costs. 

Certain services, like well child visits with chronic condition management, are now also covered at 100%, with no out-of-pocket expense. 

There are many opportunities to help providers and researchers learn more about lupus. Below are opportunities to participate in various studies that help us learn more about lupus in children. For more information, please click the link provided. You will be directed to more information about the study.  


Pediatric Lupus Trial of Belimumab Plus Background Standard Therapy (PLUTO)


Vitamin D3 in Pediatric Lupus


GENetic & Immunologic Abnomalies in Systemic Lupus Erythematosus (GENIAL)


Study of Families With Twins or Siblings Discordant for Rheumatic Disorders


The CARRA Registry


Low-dose VS High-dose IV Cyclophosphamide for Proliferative LN in Children (Low/highIVCY)



We are in the process of forming a Parent Advisory Committee. The purpose of this committee would be to inform what services and supports we, as a Foundation, provide. If you are interested in serving on this committee. Please contact The committee chair, Delores Bandy at info@childhoodlupus.org

The CLEAR Foundation aims to work with researchers. Presently we are working to develop a web based educational module for adolescents with lupus and are actively seeking partnerships in doing so. 

Please check back for other funding opportunities or e-mail specific inquiries to: info@childhoodlupus.org

Let's Talk About Sex!

Though research shows at least a third of young people with SLE are likely to be sexually active before transferring to the adult healthcare system, sexual health isn't always discussed with SLE patients. These discussions are vital not only to prevent pregnancy, but also to prevent sexually transmitted infections.

Bidwell, C., McDonagh, J. E., & Bolt, I. (2009). Let’s Talk About Sex! Journal of Rheumatology, 36(6), 1–2.

Vitamin D and cSLE

A recent pilot study surveyed cSLE and juvenile dermatomyositis patients regarding demographics, sunscreen use and dietary habits, and disease activity was assessed. Subjects of the study were given vitamin D supplements, and results indicate a possible link between the supplements and an improvement in disease activity for patients. Though results can be used only to hypothesize, they suggest a larger study is warranted.

Robinson, A. B., Wu, E. Y., & Rabinovich, E. C. (2012). Change in disease activity after vitamin D supplementation in children with systemic lupus erythematosus and juvenile dermatomyositis. Pediatric Rheumatology, 10(Suppl 1), A13. doi:10.1186/1546-0096-10-S1-A13


Comorbidity in cSLE Patients

Co-morbid conditions in cSLE patients can be linked directly to SLE itself or may occur independently. These conditions, frequently related to cardiovascular, renal and visual health in cSLE patients, can complicate treatment.  Early detection and appropriate management of co-morbid conditions is important to improve cSLE patients' overall prognoses.

 Smith, E. M. D., Foster, H. E., & Beresford, M. W. (2013). Adding to complexity: comorbidity in paediatric rheumatic disease. Rheumatology (Oxford, England), 52(1), 22–33. doi:10.1093/rheumatology/kes256


Growing Up and Moving On

Studies demonstrate the importance of a smooth transition for patients with childhood-onset rheumatic conditions, including cSLE, from pediatrics to the adult healthcare system. Though formal and informal transition programs have recently been developed, there are still significant barriers that exist. Limited resources can inhibit these programs, and because of this, programs should be extensively evaluated to consider the patient/family/provider experience, clinical outcomes, and healthcare use and costs.

Hersh, A. (2014). Growing Up and Moving On -- Transition of Care for Patients with Childhood-onset Rheumatic Disease. The Journal of Rheumatology, 41(5), 829–31. doi:10.3899/jrheum.140140


Weight Change and Corticosteroid Therapy in cSLE Patients

Though corticosteroids have proven to be effective agents in treating many autoimmune disorders, including cSLE, prolonged therapy can have many potential side effects. A study examined a group of 236 cSLE patients to determine weight outcomes in adolescent patients receiving corticosteroid treatment, and risk factors for gaining at least 10 kg. The study determined that for patients who became overweight or obese after being treated with corticosteroids, most gained less than 10 kg. The study results also suggested that obesity is not a typical outcome of corticosteroid treatment with a healthy diet, and that the most significant risk factor for weight gain was a high BMI at the beginning of therapy and cumulative dose of corticosteroids


Manaboriboon, B., Silverman, E. D., Homsanit, M., Chui, H., & Kaufman, M. (2013). Weight change associated with corticosteroid therapy in adolescents with systemic lupus erythematosus. Lupus, 22(2), 164–70. doi:10.1177/0961203312469260

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Contact Information

For more information contact info@childhoodlupus.org

The Childhood-onset Lupus Education and Research Foundation

Email: kjohnson@childhoodlupus.org