A year ago, on February 29th, 2012, International Rare Disease Day, I published a column on how I had finally come to terms with the rare illness I have been living with for 16 years. Today, after further introspection, I have come to another conclusion: I do not deserve this.
I did not deserve to have been diagnosed with Autoimmune Polyglandular Syndrome Type 1 when I was two, while others with rare diseases, of whom 50% are children, never get an accurate diagnosis, or worse, get multiple incorrect diagnoses.
I did not deserve to have had a catheter from my heart to my arm, feeding me a nutritional mix for the past three months, while other rare disease patients cannot afford a simple experimental treatment.
I do not deserve to have to inject myself three times a day in the stomach to make sure my non-functioning endocrine system can get my body the calcium it needs, while other rare disease patients have to go through various incorrect treatments as doctors attempt to find the source of the discomfort.
I do not deserve to have teachers give me extra time or forgive me some assignments due to my 504 plan, while other kids around the world fail classes because their illnesses aren’t well known enough to be recognized.
I did not deserve to get visited by teachers, friends, and family members during my month-long hospitalization this December, while people with undiagnosed rare diseases are labeled as hypochondriacs or shunned by the very people who should support them in their times of need.
I do not deserve to live in a country where a federal law, a government organization, and a private group, the National Organization for Rare Diseases, all work to help rare disease patients like myself, while in other nations, including my own native Colombia, there is still so much to be done.
On this 28th of February, Rare Disease Day, I ask not for donations. I ask not for sympathy. I ask only why I am more deserving of these opportunities than other rare disease patients. I ask why my situation is the exception, and not the norm. I ask that we all realize it is time to stand up and spread the word so that more people can be aware, and can understand why I do not deserve this.