Lupus is often called the disease of many faces, referring to its ability to produce a vast array of symptoms and countless presentations that often lead to errors in diagnosis. Lupus can affect almost any major organ, and common symptoms include muscle and joint pain, fever, chest pain, hair loss, light sensitivity, chronic fatigue, and memory issues. My first significant symptom was fever, which would last up to three weeks. When this occurred, the doctors were still trying to diagnose my condition.
As a 10-year-old boy, hockey was my entire world. I felt I needed the highest level of commitment if I wanted to be in the National Hockey League one day. 'Eat, sleep, and breathe hockey' was my motto, which might not be a surprising thing to hear in Canada. The biggest tournament of the year was a week away, and I was home sick with an unexplained high fever and projectile vomiting. As an eager and passionate player, I naturally attempted to play in the first game of the tournament, despite my poor health condition.
Following the match, my condition had continued to worsen, so my parents and I decided that I sit out the rest of the tournament and visit the hospital. After a few hours at the hospital, I was released and prescribed some medication to help with my fever.
Days had gone by, and my condition was still worsening without reason. Searching for answers, we sought the help of our family physician. My blood test revealed a meagre count of white blood cells, which are responsible for fighting infection and disease. The shocking discovery resulted in being sent back to the hospital.
Once there, I began seeing many doctors to help diagnose my condition. The diagnostic period was very emotional for me. The process began with an unnerving conversation between my family and one of the doctors which reviewed what serious illness was being tested for or eliminated as a possibility. It was then followed with a battery of tests, scans, and procedures. Following the consultation with one of these doctor, I knew that we would complete a bone marrow test to rule out leukemia.
Before this conversation, I had never heard the word leukemia. Based on the sudden darkness that had shadowed over the room, I knew there was something very wrong. As they were wheeling me away, I turned around and climbed up the bed to wave to my parents. To my surprise, I saw my mother crying uncontrollably. At that moment, I knew…they were testing me for cancer.
My thoughts began to race in every direction...What is leukemia? Is there a cure? Am I going to get better? Being so young at the time of this shocking discovery, I found my innocence often protected me by answering such difficult questions. "Don't worry about leukemia, you're super strong, Miguel; Look at all these intelligent doctors, there's a cure for sure; Of course, you will get better. It is just a matter of time, Miguel”.
I would go on to have these same conversations and racings thoughts for many other serious illness investigations, but one after another, the results came back negative. These results did bring us some temporary relief, but each negative result also brought more urgency to answer the question, "what is wrong with Miguel?!"
By this point, I was too weak to leave my bed, my fever was soaring, and I could not eat very much as I continued to vomit. During these low points, you remember everyone who was there for you. I remember my classmates sent me a giant Get Well Soon card (I still have it). I remember my friends sending me a DVD copy of the newest comedy movies. I remember my aunts, uncles, cousins, and other family members wishing me well. I remember my siblings checking in to see when I was coming home. I remember my godparents letting me know they prayed for me every night. I remember my grandparents calling to let me know they lit a candle for me at every church service. I remember my parents always being by my side from the day I got sick to the day I recovered: they were there for me every step of the way.
For weeks my parents and I had been waiting, until one day, I finally got my official diagnosis… Kikuchi disease. Kikuchi disease is an extremely rare autoimmune condition with a higher prevalence in people of Asian descent. This condition can cause blood-related complications, and symptoms include muscle and joint pain, fever, chest pain, hair loss, light sensitivity, and chronic fatigue (NIH, 2022). Symptoms from both Kikuchi and Lupus are very similar, and, commonly, Lupus patients are misdiagnosed with Kikuchi; I would not officially be diagnosed with Lupus until 4 years later, but that is a story for another time.
After my diagnosis, I was prescribed medications and treatment specific to my illness, and I started to get back to myself. My fever had begun to drop, and I had started to gain some strength back. Weeks later, I would make a full recovery and return home to a "Welcome home" celebration from my loving family.
Takeaway messages:
• During my time in the hospital, I received excellent care and support from all the healthcare professionals. Looking back on their efforts, it still warms my heart 16 years later. I would like to take a moment to extend my appreciation to all the healthcare workers out there, your work can really have an impact on people’s lives.
• Reaching out and showing your support for someone struggling with health complications does make a difference. Small acts of kindness that may seem minor to you can have a lasting positive impact on someone else, as they did on me.
• To anyone battling health complications, I want you to know there is hope and light at the end of the tunnel. Keep fighting, warriors.
Thank you for reading my story, and I invite everyone to share my story to help spread my messages.
Your friend,
Miguel
Reference:
NIH. (n.d.). Kikuchi Disease. Retrieved from
https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease
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