Hurricane Prep for Rare Disease Patients

Advice from patients who have lived through a weather emergency.

Palm Trees Before A Tropical Storm or Hurricane

What do you do if a hurricane is in the forecast and you are living with a rare disease that needs special care? Two patient originations share some advice on their websites:

Woody Hutsell, who lives in Houston, knows all too well how practical this advice could be. Woody lives with common variable immune deficiency, 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.

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In 2017, Woody survived Hurricane Harvey, which caused more than 100 lives lost and $125 billion in damage. He says he made it through the disaster due to “good planning, good luck, good attitude and good friends who helped us when we needed it.”

Here’s his advice for surviving the storm:

Good Planning

 “If you know the storm is coming, stock up early on food and water. The store shelves are empty sooner than you would expect. Also, fill up on gas,” Woody said.  

Alice Drennon, who also has CVID, was on her way home to Brownsville, Texas, when Hurricane Harvey struck. Fortunately, she had an extra supply of medication with her while she was stranded in Atlanta.  

She also recommends making sure that the power supplier in your area is aware of your condition so they know a person with a medical need for electricity lives at your residence.

Alice also keeps a list of all of her medications and medical contacts on her refrigerator in the event an emergency responder needs to enter her home.

Woody Hutsell of Houston, Texas lives with Common Variable Immune Deficiency and survived Hurricane Harvey in 2017. He took this photograph of neighbors in a small, personal boat helping other people, from his porch.

Woody Hutsell of Houston, Texas lives with Common Variable Immune Deficiency and survived Hurricane Harvey in 2017. He took this photograph of neighbors in a small, personal boat helping other people, from his porch.

Good Attitude

“Keeping a positive attitude was essential,” said Woody.

Jenny Gardner also lives with CVID. She lives in West Palm Beach, Florida. and has survived several hurricanes. “Stress is our enemy,” said Jenny. “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.”

Good Friends

Having support from good friends and family helps to keep your attitude positive, Woody said. “I was fortunate to have friends and family realize my limitations and help me when I needed it,” he recalled. “We had an armada of people and their personal watercraft pass through our neighborhood bringing in water and checking on everyone. The effort these people put into helping people they didn’t even know was amazing,” he said.

One friend helped Woody get his medication when delivery people couldn’t reach his home due to flooding and massive roadway damage. “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,” Woody said.

Jenny said she is grateful for a friend who has a generator at their house. “We take my medication there early on in getting ready for a storm,” she said. In the past she has also stayed with family in another state when hurricanes are threatening her region, she added.