Understand your teen with lupus

Published 12:05 am Monday, November 9, 2009

I always receive phone calls from parents sharing that their child or loved one has been diagnosed with lupus.

I am no stranger to this vicious disease. At the age of 35, I began my battle with it. Since my diagnosis, I have devoted many years to educating others from various disciplines about this “monster.”

Lupus is a chronic disease that involves various parts of the body, especially the skin, joints, blood and kidneys.

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Lupus impacts children in much the same way it affects adults. According to Thomas J. A. Lehman, M.D., chief of pediatric rheumatology at the Hospital for Special Surgery in New York City, although precise figures are difficult to come by, roughly, 5,000 to 10,000 children under 18 in the United States have lupus.

Most children are diagnosed between the ages of 11 and 15, but lupus can strike younger children, too. However, the majority of parents who have contacted me are those whose children are adolescents. Needless to say, adolescence can be one of the most difficult periods in anyone’s life. Add lupus to this sensitive and rebellious stage, and you’ve got a “time bomb” ready to explode!

As parents, you can help your child during these turbulent times by understanding what they may be experiencing in the following areas:

Problems with friends: Lupus can restrict friendships. This is a problem for anyone, but especially for the adolescent, since making friends is probably one of the most important activities during this stage of their lives. The adolescent may not be able to spend as much time as desired with friends. He or she may not be able to go out as often or keep late hours. It may even be necessary to cancel plans at the last minute due to illness. This can hurt friendships, new or old. Even when friends want to believe them, they are hesitant, because the person looks so healthy.

Embarrassment: Even at the age of 35, I was embarrassed to tell my family and friends about the disease. Many adolescents are also embarrassed that they have lupus. Any illness can be a stigma to an adolescent because teenagers believe they need to be OK, or it may cost them their friends. Because of this, it should be up to the adolescent to decide who among friends and others should be informed.

Angry or depression: The adolescent will have days when they are distressed about having lupus. They will be upset about the side effects of their medications and irritated about the limitations placed on them because they have the disease. The fact that it’s no one’s fault doesn’t make it better. As parents, you must treat your child just as you would if they were angry about anything else. Remember: there is no single solution that will work for everyone.

Education: Please educate yourself, your spouse and your child. You will rapidly become aware that you will have to educate the school teachers and leaders of organized activities in which your child participates. Not everyone will be aware of what lupus is or how a person gets lupus. You can help them to understand that it is not contagious, and that a person who has lupus is genetically predisposed to having the disease. Your doctor and the Lupus Foundation of America office can be very helpful sources for information in this regard.

Finally, understand that it may be a challenge to help your child to comprehend and understand all of the ups and downs of lupus. It won’t be easy, but know and believe that with your support and others, your child, too, will be able to beat lupus … one day at a time!”

For additional information contact, the Lupus Foundation of America at www.lupus.org

The LFA is the foremost national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus.

Dr. Pam Felder is a motivational speaker, trainer and author of “Lupus: How To Beat It One Day At A Time.” She is employed as a professor at Alcorn State University in the Department of Education and Psychology.