Sudden HAE attacks can result in hospitalization or a few days in bed at home; forcing many patients to miss work or school.A study was conducted in Germany, Denmark, and Spain to examine some of the impact that HAE has on people’s everyday lives, education and careers.Aygören-Pürsün et. al. found that on average, HAE patients missed about twenty days of school or work per year, and about half of HAE patients reported that HAE attacks had hindered their advancement in their education or career.
How can patients keep HAE from getting in the way of their goals and ambition as much as possible? This can be a difficult task because of the rarity and unpredictability of HAE.
It is not unlikely that employers and school administration may have never heard of the condition. The US Hereditary Angioedema Association recommends advocating on behalf of your child or self by thoroughly informing school faculty or bosses about HAE.
1. Create a School Packet
The US Hereditary Angioedema Association even provides steps and tips to assemble a printable “school pack” to be filled out by parents of children with HAE. These packets are meant to explain the condition to the child’s school and specify how emergencies should be handled. US HAE Association’s version also asserts that patients’ absences are not by choice and severe attacks may occur despite best efforts to control the disease.
2.Set Up Meeting With Teacher
Even after sending the school pack, it is always a good idea to meet with your child’s teacher in person. This way you can directly answer any questions they may have about your child’s condition and what to do if your child has an attack. It will also start an open dialogue that can be continued throughout the school year.
3. Contact Nurse and Gym Teacher
The school nurse and gym teacher should also be contacted. The gym teacher should be aware of the possibility of swelling as a result of physical trauma and the nurse should be informed of the specifics of HAE in case your child requires non-emergency medical attention.
4. Protect Privacy
Informing employers and school’s in regards to HAE should lead to accommodations when absences are unavoidable but should not compromise your or your child’s privacy. As stated within the US HAE Association’s packet, what is disclosed to the teacher or boss does not necessarily need to be shared with the rest of the class or office.
5. Medical Identification
No matter how thoroughly you provide information to school faculty it is still possible that the medical information may not be accessible at the time of an emergency. In order to make sure that a breakdown of your child’s medical history is available at all times, regardless if there is a substitute teacher or if your child is on a field trip, a medical ID of some kind is imperative. Check out Patient Worthy‘s post, Jewelry That Can Save Your Life to view some options.