Macrophage Activation Syndrome (MAS) is severe inflammation of the immune system which can be associated with rheumatologic conditions such as Juvenile Idiopathic Arthritis (JIA). I was diagnosed with both conditions in October 2010.
My name is Gauri Raj and I am currently 21 years old. When I was 10 years old, I had lost my appetite and had a constant fever for several days. I was taken to the nearest hospital as my parent’s worries and concerns for my well-being increased. The doctor sent me home without any blood tests or other examinations done and stated it was, “just a stomach flu.” The following day, the severity of my symptoms heightened, and my body began to refuse the intake of anything including Advil or Tylenol. I was taken to SickKids Hospital instead, and that is where I got the appropriate treatment for my condition. My blood tests results showed I had extremely low counts of white and red blood cells. Immediately, I was admitted to a private room to prevent transmission of any other infections around me. After several examinations and tests including a bone marrow sampling, I was being treated for MAS. The following signs and symptoms I endured during my admission were the following:
- Persistent fevers
- Inflammation in more than five of my joints
- Fatigue and low energy with headaches and feeling confused
- Rash all over my body including the bottom of my feet
- Low red and what blood cell counts
- Vomiting
I must admit, I was extremely scared and anxious. Before all of this happened, I was a healthy child who would’ve never expected to go through this at such a young age. At the same time I was diagnosed with MAS, I was also diagnosed with JIA. I had difficulties with mobility and needed assistance to use the bathroom and shower because of my flaring joints and the burning sensation of the rash on the bottom of my feet. To be honest, I did not understand anything that was happening to me in that moment, I was just a 10-year-old girl. Once I got discharged, I now had a list of daily medications. For the first few months following my diagnosis, going back to school was a real struggle and I had to have my mom carry my backpack into class for me until the medication kicked in around three months later.
Being diagnosed with JIA has impacted me a lot and continues to affect my daily life. Yes, there is a lot of physical pain involved and fatigue; however, there is also psychological and emotional pain. With this condition, I grew up feeling lonely and more anxious about my health and social life. No child should have to go to several doctors appointments and constantly swallow down medication to avoid feeling pain. No child should have to hide parts of themselves to fit in as “normal.” I felt like I had to do that for most of my life since my diagnosis due to experiences of what others would think, ignorance, and the lack of education other people had on arthritis.
To this day, I still struggle to fully accept my disease and continue to hide when I am in pain. It wasn’t until attending Camp Cambria, where I took the first step to learn to accept this part of me. I am now aware I am not alone and there are many others like me out there living with the same condition. I am learning to be more expressive and educate others about this chronic disease by raising awareness.
Thank you for reading my story.
