It’s a weird thing to say, but I think I’ve only become fully conscious of my disease in the past year.
That’s not to say the disease manifested itself a year ago – for 16 years now, I’ve had Autoimmune Polyglandular Syndrome Type 1, a rare genetic illness that occurs in one in two million people and mainly affects the endocrine system and gastrointestinal functions.
Rather, I’ve matured to a point where I fully understand the real implications.
I didn’t always feel annoyed when the doctors increased my medicine intake, which was about 30 pills until a few months ago. I didn’t really mind being hospitalized up to six times a year for issues ranging from stomach infections to low calcium levels. I didn’t feel angry when treatments didn’t work or when doctors couldn’t figure out why my body was doing what it was doing.
Now, I’m aware. I’m aware when the doctors administer potassium via an IV, bringing a sensation akin to that of having my arm lit on fire. I’m aware it’s basically impossible for me to travel to my native Colombia again because of health concerns. I’m aware that for the rest of my life, my malabsorption and elongated colon will be a curse that’ll accompany me any time I travel. I’m aware of the medical pod attached to my stomach that transmits a synthetic version of the parathyroid my thyroid gland doesn’t produce. I’m aware my body doesn’t produce adrenaline and can’t react to any physical or emotional stress I place it under. I’m aware that, no matter how much I’ve deluded myself these past 16 years, I haven’t lived – and will never live – a normal life.
But I’m also aware that I’m lucky to have been diagnosed with APS Type 1 at an extremely early age. I’m also aware that my parents have worked relentlessly, saving money in case of a new emergency. I’m aware that, even though I wasn’t supposed to live past the age of three, I am so alive right now.
Now that I’m aware, I would like to make others aware of rare diseases, too. In the U.S., one out of every ten people has a rare disease. Many of these diseases don’t have a treatment, and many of the patients are misdiagnosed or have no way of dealing with their condition. I invite you all to take a moment out of your day Feb. 29 to celebrate Rare Disease Day, and visit www.rarediseases.org to learn more and, perhaps, donate some money to research. Let’s all be aware on that date.
Pablo Ramirez is a graphic artist for the Black & White.