May marks Lupus Awareness Month! Meet Pancy, a founding council member of the Young Patients’ Autoimmune Research & Empowerment Alliance (YP AREA), who lives with lupus nephritis.
Growing Up
Growing up in a typical Jamaican household, there was reggae music every Saturday and Sunday eating the typical rice and peas with chicken or fried fish. When I moved back to Jamaica, my time was spent playing outside with my sister and cousins. Unfortunately, I feared the wildlife roaming around like goats, stray dogs, lizards, mongoose, and more. It was always so quiet because we lived in the middle of nowhere. I was not used to that because I grew up in the Bronx, and the sounds of NYC roamed the streets day and night. Early on there were signs that something was wrong. As a toddler, I had frequent nose bleeds and achy joints. My parents considered it to be a childhood illness or something that would pass. Little did we know that was the early development of my Lupus.
The Onset of My Lupus
While living in the countryside of Jamaica, I had my first flare-up. It consisted of a headache, butterfly rash, joint pain, hair loss, and weight loss. My sister and I had to fly back to NYC because I was unwell and school was about to start. When I returned to NYC, I did not see a doctor but my parents did notice a change in my behavior, skin, and eating habits. During that time I was lonely and sad due to the change of my environment and how my body felt overall.
On October 9, 2011, I was in a mock trial during my free period, and I was feeling some discomfort and fatigue. The trial had ended, but I could not seem to get up. My legs wouldn’t move. I could only move my upper body. The ‘jury’ had called my teacher over to help me. He had a look of concern on his face. I wasn’t my usual energetic self. Mr. K ended up taking me to the nurse’s office where my dad picked me up and we went to Montefiore Children’s Hospital, where I was diagnosed with Lupus and pneumonia. There were a number of tests being done, such as bloodwork, chest x-rays, and urine samples, you name it, I did it. Spending almost a month in the hospital trying to recover, my family visited me almost every day which gave me a sense of normalcy. My 11-year-old brain thought the medication would be temporary. But I was wrong.
Lupus is a disease that occurs when your immune system attacks your organs. Honestly, I still do not know how they diagnosed me with Lupus assuming that I had most of the symptoms, within 2-3 days that is the conclusion they came up with. The butterfly rash on my face had to be the number one indicator of my Lupus diagnosis. Although I was in the hospital I still enjoyed the meals and the arts and crafts that were supplied. There were a few depressing moments where I would get emotional and burst into tears because I was all by myself. Having Lupus at 11 years old was exhausting for my mental health. At 24, there are ways to look at it differently: I see it as an opportunity to possibly help others through education and my own experiences. Having Lupus reminds me to focus on the good days.
Living in NYC again, I am currently an author. I write about Lupus and I am a member/participant of many autoimmune disease projects. I became a member of YP AREA because my rheumatologist thought that being a part of the council would be great for me, as I have a lot of insight. My day job is a PCA/HHA. I spend my days taking care of geriatric patients. My interest in writing about my experience with Lupus began when I was 14. I participated in a few trials at the hospital and that is how I became a patient partner. My experiences have led to me contributing to an article about mental health and Lupus and also the importance of having doctors who are People of Color. Overall, there were many ups and downs in my Lupus journey however they led me to many wonderful people and experiences that would make me forever grateful.
