Rare Disease Experts: Worth the Cost?
Benefits of specialty care and centralized treatment must balance against limits on funding and health care resources
When you play sports or go for a run, your body needs extra oxygen and starts to feel hot. In response, your heart beats faster, your breath quickens, and you sweat to cool your body. But have you ever had to think about making those things happen? Chances are, you haven’t — you probably have a functioning autonomic nervous system.
Replacing “autonomic” with “automatic” is an easy way to remember the role of the autonomic nervous system. When it’s working correctly, it helps your body adjust to different conditions without conscious thought, making involuntary changes to things like your heartbeat, breathing patterns, and body temperature. Without those automatic shifts, you might collapse during a simple jog around the block.
Children with rare autonomic disorders lack the ability to adjust, or even to sense the need for adjustment. These children can stop breathing in their sleep, when automatic control is supposed to take over completely; they’ll turn blue when they try to run and play with their friends; they might run out into the snow with bare feet, risking frostbite, because snow doesn’t feel as cold to them.
