Some of the most common symptoms of anyone living with a rare disorder are: feeling alone, feeling misunderstood, questioning your sanity, and being dismissed by the medical community.
Most of us can tell you horror stories of going from one doctor to another, being misdiagnosed or being told it's all in our heads. We can tell you of being ostracized, bullied and made fun of in school -- and not just by our fellow students, either. We can tell you about being over-medicated and under-medicated, of knowing something was very wrong, but not being able to find out what that something was.
Doctors learn early in medical school when you hear hoof beats in the distance, think horses, not zebras. Sound advice when you consider that the vast majority of patients will have some common, ordinary medical problem. What patient with a broken arm is going to be well served by a doctor who spends a lot of time testing for exotic diseases when all they need is a simple x-ray and cast? Odds are, that one patient with Ehlers-Danlos Syndrome, for example, will never cross their doorstep.
When you hear hoof beats in the distance, think horses, not zebras. But remember that zebras exist.
Imagine, after years and years of confusion, self doubt and misdiagnoses, you finally meet a doctor who says, "Hmm. You might be a rare bird. Yu might be a zebra." HALLELUJAH! The heavens open up and angels sing! I'm not crazy. I'm a zebra!
Then you walk out of the doctor's office and you're alone again. You have a diagnosis and maybe a treatment plan, but you're still just a lonely little zebra in a big herd of horses.
Almost 7000 different rare disorders
Most of us zebras don't "look" sick. We "blend in" even while we struggle with adversities that even our own families can't understand. Depending on your disorder, you may never meet anyone else who has what you have.
Through 3D, however, you can meet other zebras, other people also living with some rare disorder.
Alone, we are rare, but together we are strong.
Alone, we can survive as solitary zebras in a big herd of horses. Together, we can thrive in a herd of zebras, just with different patterns of stripes.