On the day Chronic Disease Coalition (CDC) Ambassador Deborah Kofoed was diagnosed with lupus, her parents weren’t there. She was 17 and had just graduated from high school. The doctor left a pamphlet on the table and that was it. In that moment, she realized kids with lupus deserve so much more. Deborah recently sat down with the CDC to share her experience with lupus and how it led to becoming an advocate and youth support group facilitator.
What was it like to be diagnosed with lupus at such a young age?
I was in and out of the hospital and missed a lot of school. Though I was fortunate to attend an all-girls private school where all the students were kind to me, my illness caught the ire of the assistant principal. She often made comments about how much school I missed
Having grown up with lupus, what are some of the challenges you’ve faced over the years?
I was always hesitant to make plans with friends and family because I didn’t know if I would be sick in bed when the day to get together came around. Eventually, it was easier on me to not make plans rather than disappointing people all the time. Having a job has been challenging, too. I worked in medical billing, but my lupus began to impact my attendance. Eventually I was told to file for disability and ended up having to quit.
Advocacy has become so important to you. How did you get started?
During COVID, the Lupus Foundation of America (LFA) hosted its National Lupus Advocacy Summit virtually and I attended for the first time. I connected with other people in North Carolina where I live and met with a legislative assistant. After that, I was hooked!
You are a youth support group facilitator for LFA. Why was it important for you to take on this role?
I want kids to know that life with lupus is going to be a long journey and it’s going to be up and down, but they can do it, they will make it, and they will have a good life. This is my fifth year giving kids a safe space to share. We meet monthly for two hours and discuss a range of topics like mental health, diet and exercise and how to get ready for back to school.
What resources do you recommend for newly diagnosed teens and their families?
Lupus.org is a great place to start. From the Newly Diagnosed resources to the Children and Teens tools that include guides for talking to teachers about your child’s diagnosis, it’s all there!
May is Lupus Awareness Month
Learn how you can spread awareness and support those with lupus. Want to learn more about the disease? Check out this short video.