What’s in a Name? These Rare Disease Patients are Finding Out

Dysautonomia (dis-aw-tuh-noh-mee-uh or dis-auto-noh-meeuh) is surprisingly common.

Around the world, an estimated 70 million people are impacted by autonomic nervous system disorders. And while some forms are fairly rare, there are plenty like postural orthostatic tachycardia syndrome (POTS), which affects one in 100 teenagers. Or how about autonomic neuropathy? That’s so common that the American Diabetes Association wants people with type 2 diabetes to get screened for it upon diagnosis.

Yet, dysautonomia, the umbrella term for disorders of the autonomic nervous system, is nowhere near a household name.

Most people, including medical professionals, haven’t heard of it at all!

That’s a major problem for people like Cyndee Jacobson. She had to suffer through years of unexplained headaches and lightheadedness, even losing her job because of it. All the while, she was told again and again that her symptoms were “all in her head.”

These are familiar words to Brittany Hollinshead, who was forced to diagnose herself through Google (much to her doctor’s disapproval). And they’re sure to be familiar to the millions of other people living with any form of dysautonomia.

Awareness is always a necessity—never a luxury—for rare diseases, and dysautonomia is no exception. No one should spend years being misdiagnosed and dismissed. And when some types of the condition are so serious they may end in death, it’s an issue that affects more than just the individual with dysautonomia

It affects the patient’s loved ones.

Which is why everyone needs to be made aware of these conditions. Dysautonomia Awareness Month did its part, with events worldwide and volunteers across the United States seeking recognition from their cities.

But these efforts don’t have to end just because the month has come and gone. Even if dysautonomia never becomes a household word for everyone, it should at least be a common word in community doctors’ vocabulary.

You can help make that happen! Continue to speak up to raise awareness all year long, and look to Dysautonomia International for the support and ideas to make that happen.


Kiki Jones

Kiki Jones

Kiki’s family loves to say, “People are like a baking project. At some point, they’re just done and they’re who they’re going to be.” Well, Kiki still has some baking to do, and she learns a lot from her loved ones living with chronic conditions, including mental illness and Behcet’s disease. With a BA in English, she’s using her skills to tell the stories of people like them.

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