By Krish Parikh

On a night in 2015, when I was 12, I woke up with intense pain radiating through my joints. In addition, I could feel the sores in my mouth getting worse by the minute. I had experienced such pain before, but this was different. It was sharper and more consuming. My ankles were swollen, and even the slightest movement felt unbearable. The next morning my parents took me to our family doctor, and she performed bloodwork. On the way home, in the car, all I did was sleep. I was so tired.
As I prepared to fall asleep the next night, my parents barged into my room. They grabbed my brother and I, put us in the car and dropped my brother off with my grandparents. I stared at the stars from the car window until I fell asleep, and when I woke up, we were at a hospital.
After getting settled inside, the doctor on call said that they didn’t know what was wrong with me, but they were doing numerous tests.
I was a typical kid – energetic, active and carefree – until these troubling symptoms began to change my life. I had constant joint pain, butterfly rashes on my cheeks and extreme fatigue. It wasn’t until I had spent two weeks in this hospital, enduring countless tests, that the doctors confirmed what was wrong: I had lupus. This diagnosis not only shaped my future but opened my eyes to the lack of awareness about this condition. It’s a complex disease that affects approximately 1.5 million people in the United States alone.
Lupus is a chronic autoimmune disease that disproportionately affects women and is often underdiagnosed or misdiagnosed. Nine out of 10 adults with lupus are women, and people with a family history or other autoimmune diseases are at higher risk. As a young boy with no family history of any autoimmune diseases, my diagnosis was at first overlooked.
During the diagnostic process, my prolonged hospital stay became an introduction to the gaps in care faced by patients with lupus. Many providers lack sufficient knowledge about lupus, which results in patients – often children or adolescents – spending months suffering without an appropriate diagnosis or treatment plan.
The absence of clarity from my medical team was overwhelming. It took weeks to pinpoint that I had lupus, and during that time I was subjected to a multitude of tests that could have been avoided had there been better awareness of my disease. Because lupus symptoms can overlap with many other diseases, it is easy for doctors to misattribute its signs to something less severe. This delay in diagnosis can lead to significant health complications, including kidney damage and heart issues.
On week two of my stay, after a biopsy, I was told I had stage 4 kidney nephritis, a severe stage of kidney damage that occurs when the kidneys are working at 15% to 29% of normal capacity. While I was fortunate to have access to a hospital that eventually identified my condition, patients without access to a rheumatologist or a physician experienced with lupus can just as easily receive incorrect treatments and care.
Living with lupus has been an ongoing challenge in my life, and the burden of its advocacy unfortunately falls on those who are already dealing with such an illness. For me, resilience came through finding a support network that understood the complexities of lupus. In the past decade, I have learned to listen to my body and push for better care when necessary.
We must prioritize early education about lupus for both health care professionals and the public. My family and I organize annual galas with the specific purpose of raising awareness for lupus. Through these events, we successfully gathered donations that directly support Nemours Children’s Hospital, as well as other organizations. By raising awareness and encouraging routine screenings, we can play a part in reducing the time for diagnosis and improving outcomes for patients. Together, we can make a difference and make it easier for patients to receive timely treatments.
Krish Parikh is a third-year public health major.
“My public health story” essays originated from an assignment on public health storytelling for a public health messaging and dissemination course led by Brittney Dixon-Daniel, Ph.D., M.P.H., director of the Bachelor of Public Health program.