Rare Disease Day: I am aware

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.

Rare Disease Day is Feb. 29. Graphic courtesy www.rarediseaseday.us.

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.

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Comments

Mapala says:

Pablo,

Gracias por enseñarnos, desde muy pequeño, que la vida solo se vive una vez…
Gracias por demostrarnos con tu vida, que no podemos pasar por este mundo sin dejar huella…
Gracias porque con tu huella se benefician muchas personas que no han contado con varios de los privilegios que otros hemos tenido…
Gracias por aportar a un mundo mas solidario y justo..
Gracias por ser nuestro ejemplo de berraquera!
Te quiero y te admiro.

Maria Teresa Kralikas says:

Querido Pablo, te conozco desde que naciste y por lo tanto conozco tu lucha y la de tus padres (en especial Gloria) y te felicito por lo que has llegado a ser, tu vida es el mejor ejemplo de que juntos somos fuertes…

Te recordamos siempre,
Los Schumkler

Olga lucia Martínez says:

Pablo:
Siempre has sido un luchador y con el apoyo y la constante dedicación de tus papás has superado las crisis.
Nos sentimos muy orgullosos de ti, y sabemos que el tratamiento que estas adelantando será muy conveniente te ayudara mucho y además servirá para que pueda aplicarse a otras personas con APT, y así estas dando tu aporte a la humanidad.
Olga Lucia

Mariflor says:

I have been a witness of many of your troubles. Proud of you for having coped the way you have and for becoming the person you are.

Chubbah says:

You are a trooper.

Diana says:

Pablo, let me congratulate you for being so brave, gentle, honest and share your life experience with us. You are an inspiration for thousands of people that need to know what life consist of. Big changes begins with small actions and the fact that you share your feelings and what you’ve been trough it’s a huge way to start generating awareness, not only about rare diseases, but also you are helping people realized that everything in life is possible once you have passion for living.

Keep it up! Proud of you!
Diana

Rachel Sieradzki says:

this is beautiful and so inspiring pablo. i’m really proud of you. we all must remember how fortunate we are to live in this time and place, in this situation and circumstances; because there are others who are less lucky and who need more help, medical and otherwise. thank you for spreading awareness. keep it up!

Teresa says:

You are inspiration to me and so many that feel alone in their disease and frustrated. Being through so much , you bring renewed life to those who follow in your shoes. Take care.

Todd Talarico says:

Pablo…outstanding! You are becoming quite an artist. Keep up the outstanding work and spreading the news around APS Type 1.

I’m very proud to share with my friends and family. Have a great Rare Disease Day!

Todd

Sincerely, A Girl says:

Dawwwwwwwwwwwww Pablo we wuv you remeber that.

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