Five Times We Felt Empowered About Living with Rare Disease

1. When we were diagnosed.

The first hurtle is always the hardest. Whether you’re parents of a newborn waiting and waiting on test results or well into adulthood sitting in for one last x-ray–getting your answer (no matter how devastating) –can make you feel like you’ve pushed through an impossible barrier.

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2. When we stood up for our right to the best treatment.

When it’s you or your loved ones, no disease is “too small” a patient population for research. Hey! This is someone’s life here and if you have to knock on the door of every big pharma corporation to get a little attention, you’ll do it! Stepping into the rare disease community, learning about your patient pop. and what relevant clinical trials are happening can make you see that the world isn’t standing still–your chance at a better life is happening right now.

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3. When we first met a fellow patient.

When you’ve muddled through your first few years or months of trying to understand your disease the feeling you most specifically settle on is loneliness. Maybe there isn’t a support group meant for you just down the street. Maybe you won’t see someone with a matching medical ID bracelet in your doctor’s waiting room. Meeting that first patient with the same rare disease as you is like connecting with a long lost friend. The feeling that you’re in this alone melts off your shoulders.

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4. When we educated a doctor.

It isn’t fun when you know you’re heading full speed into an emergency room full of doctors who have never heard of your disease. You’ll take a deep breath, pull out your pamphlets or point them towards Google–somehow you’ll get through this disaster of misinformation and the next patient they encounter with this rare affliction?  They’ll thank you for it.

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5. When we looked at the big picture.

There are over 7,000 known rare diseases. There are 30 million people in America ALONE living with a rare disease. It is estimated that 350 million people suffer from rare diseases world-wide.  Think you’re the only one xeroxing your medical records, fighting for your insurance to approve treatment, educating doctors who didn’t learn about you in med school, hunting down specialists online, trying to find the right words to explain your life to your friends, co-workers, in-laws, cousin, baby sitter and realtor?

Well, nice to meet you too.