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Thirty-One Faces of Hope: Carly Johnson

The lupus community includes people living with lupus, friends, family and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions. 


Carly Johnson

In March of 2019, at the age of 16, I was diagnosed with lupus. It was my Junior year of high school and am now finishing my freshman year of college. My lupus is now under control as we caught it extremely early.

My symptoms started in December of 2017 and I was diagnosed with lupus March of 2019 because my mother kept pushing for answers. I went to almost every doctor one could imagine and did not get a solid answer until I went to my rheumatologist.

My symptoms started as a rash on my legs, which led to many major rashes all over my body including the famous butterfly rash.

As my symptoms progressed, I began to have joint pain and pain all over my body in general. I have also gotten sick more in the past two years than I ever have before in my life. I got the flu my senior year of high school before COVID started and right when I got back to school, it was shut down due to COVID. So, I missed out on a lot of high school experiences that I had thought about my entire life, including graduation.

In December of 2020, after I had been sick multiple times my tonsils were destroyed so I had to get them removed.  After surgery, my lupus caused me to have a terrible attack in reaction to the anesthesia.

Fast forward a month later when my tonsils were still in the beginning stages of healing, I caught COVID, which was mine and my mom’s biggest fear. It started as a heavy chest with cold-like symptoms, it eventually progressed so far that I had a fever ranging from 100-104 for several days and had to be hospitalized for about a week. I thought my body was giving up, I had never felt so hopeless and sick in my entire life.

We are not one hundred percent sure where my lupus came from, but we have some ideas considering my mom’s mother has multiple sclerosis and my dad has multiple symptoms and skin issues that very much resemble that of a lupus patient.

It has been a long but short fight at the same time as I feel I am one of the lucky ones as it generally takes 7 years to be diagnosed. There have been several things I have had to overcome but the major one being my skin changing and becoming more sensitive, which has led to some insecurity issues.

I used to have tan flawless skin and a porcelain like face and now have quite the opposite. However, I have learned how to embrace lupus as it is something I now must live with forever, even though some days are worse than other I keep pushing to get to achieve my dreams and could not have done it without my God, my mom, or my boyfriend.

It is extremely hard to put into words what I have been through, it is hard to put into words how I feel most days. It is hard to put into words the effect it has on me when I try to explain lupus to someone, and they tell me I do not look sick.

At the end of the day there is nothing I can do about having an incurable disease other than take care of myself as best as I can and live my life chasing my dreams.

- Carly Johnson, Lupus Warrior