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| Been there, done that | |
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| Do you ever wonder how many CPT deficient people have gone to the
emergency room for help only to discover that none of the physicians on duty has heard of
CPT deficiency? To help relieve the anxiety of placing yourself, rare disorder and all, into the hands of a white-coated stranger, try these suggestions: 
Carry a small notebook that contains a brief description of diagnosis, medical history, medications, and your physician’s name. Patients report that written information carries more credibility.
Carry an emergency protocol written for you by your physician. It may include diagnosis, symptoms, triggers, history of emergency situations, as well as treatment guidelines for crisis.
Be informed about your disorder. You may be able to prevent complications by tactfully offering information, or if necessary, by refusing suggestions you know would be harmful. |
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| Related
links: Hospital survival guide (Better Homes & Gardens) How to feel empowered while lying on a gurney. You know it's going to be a bad day in ER when... Overcrowding in emergency rooms common  USA Today article from April 2002. A Peruvian hospital experience
 To read CPT
deficiency emergency stories, visit Getting
carried away, Seeing red, Running in the family
and The great Alaska
kick-start.
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Looking
out for yourself in a hospital, in spite of feelings of
vulnerability and intimidation, requires practice. Hospitals
are designed to make you feel that you don't really know much.
Record everything from antibiotics to X rays in your personal
hospital diary. Know who is doing what to you at all
times. 
