Thursday, February 28, 2013
Rare Disease Awareness Day
It is estimated that 1 in 20 people have some kind of rare disease.
I am 1 in 20
In treating these conditions, mental health is just as important as physical health, and most people struggling with a rare condition end up feeling alone. That's why there's this day: rare disease awareness day, to join hands and take down the borders surrounding rare diseases and let people know that they aren't alone.
I was diagnosed with glycogen storage disease type 1A when I was 4 months old, and with dysautonomia when i was 15. I've gone through many, many tests, hospital stays, doctors appointments, new treatments, therapies... I know what it's like to be alone, to feel hopeless. I've watched friends fight their own battles with rare diseases, and for all of my life I've been fighting my own.
I've been sick for pretty much all my life. I don't know what it's like to be 'normal'. I don't know what it's like to look at myself and not see the G-tube or what it's like to be an average 16 year old. I know this: doctors, hospitals, needles, tests, scans, pain, isolation, surgery, feeling alone and hopeless. I know more about my conditions then most doctors, and my heart rate has been higher then that of patients on medical shows right before they get the paddles. This is my world.
But I also know this: hope, what it means to be a fighter, strength, bravery, and courage. Even in all of this, I am blessed. And because of all of this (not in spite of it) I am standing tall, stronger than ever.
Today I'm not asking for a cure, though I have faith that one will come someday. I'm not asking for a life with less struggle, less pain or less hospitals, doctors, tests...
Today I'm just asking for help in raising awareness for rare diseases like mine.
I'm asking for you to help break through the silence that surrounds rare diseases.
I'm asking so that nobody feels like they have to suffer through these conditions in isolation.
i'm asking so that no other person like me feels like they are alone
I'm asking because alone we are rare, but together we are strong.