As Hurricane Florence approaches the East Coast of the U.S., and we remember the events of September 11, 2001, it’s worth reviewing how to be prepared for crisis situations so that we can manage PKU or other disorders at these times. While we’re trying to keep our families safe, and make sure we can continue to manage diet & medications, we have the additional burden of needing to educate emergency workers about PKU.
Last year, PKU Parent Brandi Womack and many others came together during the hurricane season to create PKU National Disaster Relief on Facebook. This group was instrumental in distributing supplies to those in Texas, and later, Florida and Puerto Rico, affected by the storms. It’s still going strong, and is ready to help those in need during this hurricane season. Join now and be ready to request or provide help as needed. According to Brandi, the most requested items last year were pasta & PKU formula, so keep those extra (unexpired) cans at hand!
And, did you know that you can “check in” on Facebook to mark yourself self during an emergency? Keeping your loved ones aware of where and how you are can help decrease the stress of situation.
Several PKU and Rare Disease organization also have great resources available:
- Shout out to Southeast Regional Genetics Network Consumer Alliance for many excellent resources for families with rare conditions. Here is an excellent checklist for preparing for an emergency.
- The NPKUA’s My PKU Binder has a chapter on emergency preparedness as well.
- The NSPKU has a great educational resource directed at pharmacists in the case of a hospitalization but, it could be used to help educate emergency workers or other healthcare workers during an emergency.
Under current medical food laws, it can be difficult to have extra formula set aside for an emergency situation. We recommend that if you are able to plan ahead, like in the case of a hurricane, take enough bottled water and formula for at least a week. Remember, emergency agency will typically have supplies for change of clothes, bedding, etc but they will never have PKU formula.
If you are in the path of a storm and know where you might evacuate to, use this tool to find the closest metabolic clinic to your temporary refuge. They may be able to help you get extra formula in a pinch!