My family and I often take day trips to amusement parks that are an hour or two away from home. Typically, a day trip involves packing a cooler with bottles of water, sunscreen, and of course, FIRAZYR® (icatibant injection) (a medicine used to treat acute attacks of HAE in adults 18 years of age and older) to treat my husband David’s HAE attacks. FIRAZYR doesn’t need to be refrigerated, which I think makes it easy to travel with. We transport David’s FIRAZYR in a small cooler just in case of warmer temperatures. Store FIRAZYR between 36°F and 77°F (2°C and 25°C). Do not freeze FIRAZYR, and keep it in the original carton until you are ready to use it. For the most part, I feel fairly comfortable traveling an hour or so away from home.
Longer trips and vacations, however, are a different story.
Whenever I know a big trip is coming up, like a weeklong vacation to the beach or traveling out of state for ice hockey tournaments, I make sure to plan in advance:
- I contact my Patient Services Representative at The Hereditary Angioedema Association (HAEA) to obtain the name and telephone number of an HAE-treating physician in the area we are traveling to. I recall one situation when the HAEA rep called a physician ahead of time to let him know that we would be in the area on vacation. That way, he would be familiar with our names if we experienced an emergency that required his assistance.
- When traveling more than three hours away from home, I always make sure we have enough FIRAZYR for the duration of the trip, and some waiting at the house for when we return.
- We also make sure, regardless of how far we are away from home, to have a “diagnosis letter” on hand, detailing my husband’s HAE. Both David and I keep a hard copy of the letter as well as a digital copy for easy access.
With FIRAZYR on hand, a telephone number for emergency medical care, and a diagnosis letter explaining that my husband has HAE, I feel as prepared as I can be when we are away from home. The only other thing needed to enjoy my vacation is my loved ones by my side!
How do you plan a vacation around HAE? Leave a comment below!
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