Youth and Lupus

Being a youth can be challenging, let alone a youth living with lupus. Of the general population diagnosed with lupus, around 20 percent are 20 years old or younger, often between the ages of 11 and 15. 

The diagnosis of lupus is the same in children as it is in adults. That being said, children and adults with lupus do have important differences. Some key studies have shown that children with lupus tend to have more severe organ involvement. Many organs affected by lupus can “heal” and return to normal when treated. Some organs, like the kidneys which filter your blood and make urine, and your brain, may not heal after being affected. 

The longer lupus is active in your body, the more damage it accumulates. Adults tend to more commonly have either painful arthritis or a typical skin rash to give them an outward clue of what may be going on inside the body. Children are less likely to have arthritis or a skin rash, thus lupus can more likely cause severe and sometimes irreversible internal organ damage before the disease is recognized and treated. 

In general, medications for lupus are well tolerated by most, but children tend to tolerate the medicines very well – with the exception of prednisone. Prednisone is needed by almost everyone to control lupus symptoms, but it’s not without its side effects. For children, prednisone can affect development of bones at a crucial time in life, interfering with the ability to put calcium into bone. Prednisone can also cause a pause in height growth. Most of these effects are reversible if the prednisone course can be kept to a minimum. Other medications to control the overactive immune system responsible for lupus are used in children to limit the time needed on prednisone. 

A lupus diagnosis is overwhelming for an adult, let alone a youth. It’s important to communicate with your child or teen about lupus and what this means. Although it may be hard to imagine, help him or her realize that it is possible to live a normal life with lupus. If you’re struggling to support your child or teen, it may be helpful to also have a conversation with your pediatric rheumatologist or a counselor.