Rare Disease and Rare Weather

Get tips from primary immunodeficiency patients who have lived through hurricanes.

Palm trees blowing during a hurricane

For someone living with a rare disease, severe weather poses challenges beyond the usual concerns about power outages and having enough food and drinkable water.

Patients who have weathered big, destructive storms share three lessons they learned:

1. Keep extra medication on hand, just in case.

Alice Drennon was in Atlanta, on her way home to Brownsville, Texas, when Hurricane Harvey struck in 2017. The hurricane meant that it would be days until Alice, who lives with common variable immune deficiency (CVID), would be able to get home. Fortunately, she had an extra supply of medication with her – an experience she took as a lesson about being prepared when traveling.

CVID is one of the more than 350 types of primary immunodeficiencies (PI). People with PI are missing part of their body’s immune system or it is not working correctly. This leaves them more susceptible to infections.

2. Accept help from family and friends.

Woody Hutsall, who also has CVID, also lived through Hurricane Harvey. But in the aftermath, flooding and road damage was so severe his medication couldn’t be delivered to his home.

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“The only option for me was to have the medication delivered to a friend’s home. He received the shipment and then we each drove 30 minutes to a meeting area beyond the impact zone so I could receive my medication,” Hutsall said.

“I was fortunate to have friends and family realize my limitations and help me when I needed it,” he said.

3. Stay positive and roll with it.

Jenny Gardner, another CVID patient, lives in West Palm Beach, Florida so she knows all about hurricanes. The worry and uncertainty are stressful, but she recommends making the best decisions you can and staying flexible. 

“Stress is our enemy,” Gardner said. “I have always been a control freak to a certain extent, but my disease does not allow me to be in control. I have had to change my thinking from time to time and realize I can only do what I know to do and just ride out the storm, deal with whatever happens, and move forward.”

What else can you do to be prepared for dangerous storms?

  • Heed orders to evacuate. Relocate to a designated shelter or the home of a friend or family member whose home is out of the danger zone.
  • Keep a complete list of medications and medical contacts.
  • Let your power supplier know if your medical needs require electricity, such as for refrigerated medicine or medical equipment. After the storm, when workers are trying to restore power, your home might get priority.

Get more suggestions from the patient group, the Immune Deficiency Foundation. Consult its guidance: How to Prepare for an Emergency When You Have Primary Immunodeficiency.

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