Daniel Petroni, M.D., Medical Director, Clinical Development at BioCryst Pharmaceuticals
Each fall, millions of students prepare to go back to school, a milestone often met with excitement and jitters. For those living with Hereditary Angioedema (HAE), and their care partners, navigating a new school year means also facing additional considerations.
Careful planning and having a game plan are important parts of setting the stage for a successful start to the new school year. From learning how to educate new teachers and classmates about HAE, to getting comfortable with advocating for yourself or a loved one in a different environment, and having a robust emergency plan, preparation is key.
Whether you are a parent or care partner getting ready to drop a child off at their freshman dorm or first day of preschool, or a student experiencing those milestones yourself, here are some tips and best practices that can help you feel prepared for a happy and healthy school year.
Daycare, Preschool, and Elementary School Years
Even when children are just learning how to communicate, it’s important to start teaching them to share about their HAE and empower them to recognize when an attack is arising so they can let teachers and staff know in a timely fashion.
If you’re a parent or care partner to a school-age child with HAE, the following steps can go a long way in fostering a smooth transition:
Establish a personal relationship with the school nurse and administration. If timing permits, arrange a visit to the school well before school starts to get younger children comfortable with the transition.
Develop a special “sign” or “code word” that kids who feel shy or embarrassed can use to let staff know they need assistance (and be sure staff members know the sign as well!).
Utilize compelling and age-appropriate resources, such as the HAEA Children's Book Series , to help teachers and classmates learn about HAE in a relatable and interesting way. Parents and care partners can even volunteer to be a “Guest Reader” and share the story to start the conversation. The HAEA will also send a free copy of the children’s book series to your child’s school library! You can request a copy using this form.
Middle School Years
These years can be particularly tough for students in general, never mind sharing about HAE and anything that may make you feel even more “different” from your peers. This is also a time when many students begin to participate in sports and other extracurriculars and have more autonomy from their care systems.
If you’re entering middle school:
Ensure you’re prepared to communicate information about your HAE and escalate any attacks in a timely fashion.
Work with a trusted adult, such as a guidance counselor or favorite teacher, to establish an open dialogue about your HAE and how it could impact your school experience.
Discuss any changes or additions to your treatment plan with your healthcare team well before the school year starts, such as adding a prophylactic (preventative) treatment if needed, especially if you will be participating in activities that may bring on more disease activity.
High School Years
High school brings even more time away from parents and care partners and is the time to reinforce ownership of managing your HAE. Many young adults will also take on part-time jobs and need to think through communicating about HAE with employers.
At this stage, you should work with your parents or care partners to:
Take on more responsibilities while they are still around to step in, if needed, to start preparing for the autonomy of entering college or the workforce upon graduation.
Revisit the need for a 504 plan or any other school or workplace accommodations, if necessary, as this is also the time when grades and attendance are of increasing importance.
College Years and Beyond
Regardless of whether your university is in your hometown or hundreds of miles away, there are a few things you should do before starting college:
Meet with your healthcare team early enough to have all of the necessary documentation the school may require.
Ensure you have ample supplies of rescue medications and any prophylactic or preventative medications you take. You should always have at least two doses of rescue medication on hand at all times.
Ensure you’ve shared customary notifications before you’re no longer covered by your family’s plan.
The HAEA Scholarship Programs provide financial support for people with HAE who are entering or attending college and seeking to improve their lives through academic achievement. Learn more about the HAEA Scholarship Programs.
For those leaving for college or a job in a new town, you should also:
Get referrals for a local provider and center, including emergency care. An academic medical center, if available, is usually the best bet for finding someone who has experience, or at least an understanding of managing HAE. The HAEA Health Advocates can help you find a knowledgeable physician in your area! Fill out the HAEA’s Physician Referral Form.
Find out in advance if the local emergency facility has any HAE medication on formulary and if not, determine if bringing your own treatment is possible with the appropriate documentation from your healthcare provider.
Confirm any medication storage policies for your dorm room (if applicable), how best to secure them, and if you will have access to proper storage should your drug require refrigeration.
Schedule an appointment to check in with your healthcare team when you know you will be home, such as a holiday or summer break.
No matter where you or your loved one is in your HAE or educational journey, advance planning and preparation will allow you to focus on why you’re there – to learn! Sending best wishes for a wonderful and enriching school year ahead.
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