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10 Disaster Planning Tips for People with Cystic Fibrosis

What to Do to Make Sure You’re Ready


Updated September 16, 2008

Getting caught in a disaster without a safety plan is not a good idea for anybody, but for people with cystic fibrosis and other chronic illnesses, lack of planning can lead to unnecessary tragedy and preventable loss of life. Don’t wait for imminent disaster to start thinking about how you’ll stay safe. Follow these steps and make sure you’re ready before disaster strikes.

1. Know Your Risks

The first thing you must do when making a disaster plan is to know what and when you are planning for. Fires? Floods? Earthquakes? Tornadoes? Hurricanes? Something else? Is your threat seasonal or year round? Get to know your geographical area and the types of threats you are most likely to encounter.

2. Know Your Resources

Don't try to figure everything out on your own. Draw on the expertise of those who know what to do in your situation. To get you started, try some of these resources:

  • County Emergency Management Offices: Find out what your county has to offer in the way of shelters, transportation, and assistance programs. Also find out what type of early warning systems your county has in place.
  • Cystic Fibrosis Treatment Centers:Talk to your health care team at the CF center to find out what resources they have or can refer you to that will help you meet your medical needs.
  • National Resources: No matter where you live, you will find a wealth of information and services from agencies like the Red Cross and Ready America.

3. Make a List of Things You Need

Take an inventory of everything that you will need to make it through the day. Don’t leave anything out. Think about things like:

  • Medicine and nutrition supplements
  • Refrigeration
  • Electricity
  • Equipment
  • Supplies
  • Access to doctors
  • Communication
  • Transportation

4. Assemble a Kit

Now that you know what you’ll need, start to gather the things on your list. Make sure you include:


  • 2 week supply of medicines that come from your local pharmacy
  • 4 week supply of medicines that come by mail order, because the post office may experience delivery delays in the midst of a disaster.


  • Batteries
  • Oxygen tanks

Important phone numbers:

  • Doctors
  • Pharmacy
  • CF Foundation
  • Family and emergency contacts

A list of your:

  • Medicines and allergies
  • Diagnoses
  • Treatments
  • Providers

5. Prepare for Utility Outages

What will you do if you lose power or water? You'll need:

  • An alternate power source: If you can, consider purchasing a portable generator to provide electricity for your equipment. If you can’t get a hold of a generator, talk to your equipment vendors to find out if battery operated versions are available.
  • Bottled water: At least a two week supply
  • A cooler: For storing medications, especially Pulmozyme and Tobi
  • A knowledge of manual chest physiotherapy: Brush up on manual airway clearance techniques, in case you can’t use your vest.

6. Plan Your Escape

Draft a map of your house, and then use it to plot your escape route. Be sure to consider how you will get your equipment out. Plan a backup escape route in case you are unable to follow your original plan. Know your neighborhood evacuation route so you are familiar with where to go once you get out of your house.

7. Know Where You’ll Go

Some options to consider:

Special needs shelter: Most counties have at least one shelter designated for people with special health care needs. Often, these shelters are staffed with medical personnel and usually they have generators to ensure refrigeration and power.

Regular shelter: If you just need a place to go without all the bells and whistles, a standard emergency shelter may be an appropriate choice. Before choosing any shelter, be sure to talk to your doctor about your risks for exposure to infection in crowded places.

Out of town: If you are planning to seek shelter out of town, be sure to find local health care providers ahead of time. The Cystic Fibrosis Foundation or your CF Care center team can help you with that.

8. Build a Disaster Network

Disaster tree: Create a phone list with your family and friends. When a disaster hits, the person at the top of the list should call the next in line to make sure they are okay.

Helpers:Arrange in advance for people who can be available to help you, if needed.

9. Write Your Plan Down

Make sure the people in your network know what you intend to do. Write your plan down. Keep it in a safe place and give a copy to the people in your network.

10. Practice Makes Perfect

At least once a year, stage a mock emergency and practice your plan. Check your disaster kit to make sure everything is there and replace expired items. Escape from your house and drive your evacuation route to wherever you plan to go in a real disaster. Be sure to include the people in your network and test out the disaster tree.

Related Video
Create a Family Disaster Plan
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