Myles Brown, a freshman actuarial science major, initially thought nothing of his sore throat last year. But that sore throat lead to a three-month battle with a rare disease called Kikuchi-Fujimoto.
Known informally as Kikuchi, it is a rare autoimmune disease that directly affects the lymph nodes. The most favored theory of the cause of Kikuchi is that it results when one or more unidentified agents trigger a self-limited autoimmune process, according to www.emedicine.com.
Side effects of Kikuchi vary from patient to patient. The disease is uncommon in African American males, so Brown was caught off guard when his doctor gave him the diagnosis.
“When I heard I was diagnosed with Kikuchi, I thought they were trying to pin something on me and send me home,” Brown said. “I didn’t even know that there was such thing as Kikuchi.”
Brown recalls his family’s reaction to his newfound disease and their attempts to comfort him in his time of need. His family members occasionally made jokes pertaining to the name of his disease.
“Most of my family member’s reaction to the disease would ask, ‘What you been doing to get that disease?’ in a laughing matter,” he said.
Brown’s first attack occurred during his senior year. When he complained to doctors about a sore throat, they instructed him to give it time to heal. When he was tested for strep throat, the results came back negative.
Brown said that he began to consistently vomit and experience severe headaches. In addition, he barely ate and slept over 16 hours a day. It was not until he was running fevers that his mother took him to the hospital.
“Every day I did not feel like myself. I could feel myself get weaker and weaker. I knew then that something was wrong,” Brown said.
Different physicians from pediatrics to Infectious Disease Specialists came to Children’s at Scottish Rite Pediatric Healthcare to conduct tests on Brown. However, the problem continued to expand.
“When I was at the doctor, I remember taking what felt like one million tests. They tested me for every disease from HIV to meningitis,” he said. “Every test that the doctors ran came back negative and it seemed as I was fine. However, I was still running fevers every six hours.”
Doctors informed Brown that he had to undergo surgery to remove bone marrow from his back and a lymph node from his neck to test for rare diseases.
“When I heard about surgery, I was terrified, because I never in my life had to go through surgery. I was afraid of what the outcome may be. However, it was something that had to be done,” he said.
From the neck biopsy, the doctors diagnosed him with Kikuchi. After diagnosed, he was prescribed steroids used for treatment.
Post-surgery took four months. Brown was limited on going to locations other than school and home. To prevent infection, he bandaged his wound.
Managing Kikuchi and school work
Being hospitalized for three months did not stop Brown from maintaining his 3.8 GPA. During his stay at Children’s at Scottish Rite Pediatric Healthcare, Brown e-mailed his teachers for academic assistance as well as had a teacher from his school teach him assignments twice a week.
”I felt like that was a key to me maintaining my grades and keeping an update on my school work. I did not want my stay in the hospital prevent me from living a normal life. I refuse to let this disease to stop me from graduating on time,” Brown said.
Brown graduated from Redan High School in the top ten percent with honors.
Life with Kikuchi
Since the attack, Brown has to take his recovery one day at a time due to Kikuchi’s random attacks on the body. To prevent future attacks, it is important for Brown to attend monthly check-ups and take vitamins to strengthen his immune system. Patients of Kikuchi-Fujimoto disease should be followed-up for several years to survey the possibility of the development of systematic lupus erythematous.
Since the disease causes loss of appetite, it is important for Brown to eat regularly and check his weight daily. Physical activity is still limited.
“It bothers me that I can not play sports as much I would like to,” said Brown. “However, I found other things to occupy my time.”
Brown said he plans on developing a foundation to find the cause and cure for Kikuchi-Fujimoto.
“I want to put my interests and my gifts together. I want to be able to look back on my life and be proud of my contributions to society. I am working on making the world a better place for the next generation,” Brown said.
