Sep. 21, 2018

Kids with Lupus Need Mental Health Support

Stress. Worry. Sadness. These can be common for young people with lupus and their families. In fact, 1 in 3 young people with lupus experience depression or anxiety.

Sylvia Faircloth lets us in on how she and her young granddaughter have struggled living with lupus.

“I was strong, healthy and very vibrant, and then all of a sudden I was living my life with limitations and restrictions," said Sylvia, who was diagnosed with lupus in 2008. “It was a bit much. I began to have so much pain in every part of my body to the point I mentally couldn’t deal with it alone. I was determined that these diseases would not keep me in depression so I sought out support from others.”

Sylvia is not alone in this battle. Coping with a lupus diagnosis is difficult no matter what age, but especially for children or teens. Her granddaughter was diagnosed with childhood lupus at eight years old and faces her own everyday struggles, too. 

“She is in the fifth grade and her biggest challenge is when her mouth and face have a flare,” Sylvia explained. “She doesn’t want any of her classmates to see her this way, and it was so emotional for her that her mother suggested home schooling. She has faced many difficulties with lupus and is learning daily how to cope with how others see her.

“More studies and research need to be done to support people with lupus and their mental health needs. The more knowledge shared about lupus, the better for everybody. It affects more than the physical body, but the emotional, spiritual side as well.”

Sylvia is encouraging others impacted by lupus to take part in a survey about mental health in young people with lupus.

The Lupus Foundation of America is currently working with researcher Dr. Andrea Knight through our PARTNERS network to carry out this survey. We hope this will improve emotional support for youth and their families by identifying needs and challenges in accessing the right resources.

The survey is open to teens and young adults with lupus ages 14-24 and parents of patients ages 8-24. The survey will take about 20-25 minutes. We would appreciate your responses by September 30, 2018.

Please click below to participate in this survey.

For more information about the study, please contact:

Andrea Knight, MD MSCE, Principal Investigator, .(JavaScript must be enabled to view this email address)
Lauren Faust, Study Coordinator, .(JavaScript must be enabled to view this email address)