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Reports of impending weather send everyone running to the store to stock up on items they may need during an emergency, such as natural disasters, like snowstorms, hurricanes, earthquakes or wildfires. Ensuring that you have readily available access to food, water and even electricity is often your first thought, but what about your other needs? For those living with a chronic illness, like a primary immunodeficiency disease (PI), you may rely on lifesaving treatments that, despite weather, you still need. While these natural disasters are out of our control, fortunately, our response to them doesn’t have to be. It all starts with a plan that goes over everything you need to get through an extreme weather event, and covers both sheltering at home and evacuating to other accommodations.

“Think extreme camping on steroids,” is how Joanna, a member of the IDF community described the aftermath of Hurricane Sandy in 2012.

Creating a plan that ensures all your specific health needs are met, regardless of the conditions outside takes time, which is why it’s smart to start planning now. Here are some tips to help you weather (pun intended) anything Mother Nature throws your way.

The Three-Day Rule

Most emergency preparedness experts suggest that you need to have food, supplies and medication to last for three days, at least. An emergency supply kit should be your go-to during an extreme event and the sooner you get your supplies pulled together, the sooner you’ll be ready. Stocking up on basics, like non-perishable food, water, flashlight, first aid kit and personal care items is essential; but as someone living with PI, so are any medications and specialty drugs, pumps, thermometers and other healthcare essentials. For how to best prepare, check the “PI Emergency Supply Kit Checklist.”.

Staying Healthy

Even though our world may turn upside down, the best way to get through an emergency is by staying well. To do that, you need to make your health your number one priority, regardless of the events taking place outside your door. Who better to help ensure that then the members of your healthcare team? Your doctors, nurses, social workers or medical case worker, pharmacist, etc. can be contacted now to arrange visits, phone calls and plans with them long before the storm clouds start brewing. They, too, have their own emergency preparedness plan, and will be glad to help you figure out your own. All you have to do is start the conversation.

Here are some questions and topics you can bring up at your next visit:

  • I’m worried about running out of medication and not getting access to a pharmacy. Can I get a reauthorization for extra medication refills?
  • I’ve been reading that a three-day supply of all medications, at minimum, are necessary. Does that apply to me? How much can I receive and how soon can I get it? I’d like enough medication to keep in my emergency supply kit to have on hand all year round.
  • How long can my refrigerated medications last if I lose power?
  • I receive my infusions at a center or hospital, what is the contingency plan if the center is closed?
  • How can I get in touch with your office if I get sick during a natural disaster?
  • Are there immunizations/vaccinations that my family should be up-to-date on and which ones are especially needed to keep me safe in an emergency situation?

Take Advantage of Readily Available Resources

While you may just be starting your emergency ready plan, take advantage of the information and resources that are already out there. Whether it’s using the Center for Disease Control and Prevention’s Disaster and Severe Weather Guides (www.cdc.gov/disasters), finding your local Emergency Management Agencies (www.fema.gov/emergency-management-agencies), using IDF ePHR to easily track your health, at any time and any place (www.idfephr.org), or following your local emergency services for updated information, you can find helpful information and tools that can keep you safe and keep your health in order during emergencies.

Don’t forget to program key contact information into your phones, along with emergency contact information, labeling contacts as “ICE.” You can also have a digital lifeline by staying in contact with fellow members of the PI community through social media, sharing information and speaking to those who understand what you are going through.

Follow the Instructions of Local Authorities

If an evacuation order is issued, follow it immediately rather than “wait and see what happens.” It is much harder to attempt to leave once a storm or wildfire hits. Have an evacuation plan ready for you and your family. If staying in place is an option, stay put and listen for updates on the TV or radio.

You can also see if your local authorities, news stations and emergency services have social media accounts. Often, these are updated with any new information on evacuation and updates.

Keep Things Business as Usual

Trying to keep your usual schedule as best as possible will both help your physical and mental health during an emergency/natural disaster. Remember to take your medications and infusions on time, try to go to sleep at a decent hour, keep active and aim for a level of normalcy as you wait for the sun to shine again.

Don’t Be Shy and Know Your Rights

During a natural disaster, be sure to identify yourself as someone with PI. Sharing your story can get you the help you need as soon as possible. If you need to visit a hospital, inform the emergency personnel that you have a chronic, rare disorder and you know how to manage it, sharing with them your medical information, like from your IDF ePHR on your phone, for instance.

Under the Americans with Disability Act and Section 504 of the Rehabilitation Act, individuals with chronic diseases are guaranteed the right to receive reasonable accommodations. If you find yourself needing assistance through disaster relief programs, this status can help you cut through red tape and receive the benefit of community or government programs and resources.

Ensuring you’re ready in the face of an emergency may not be an easy task, which is why taking steps now to prepare for anything will pay off in the long run.
To learn more about how to be prepared in an emergency, visit the IDF website at: www.primaryimmune.org/emergency-checklist.