Heading off to college is an exciting milestone, one that brings new independence, fresh opportunities, and the chance to shape your own future. If you’re a young adult living with Hereditary Angioedema (HAE), this transition may also come with some unique challenges. Whether you're moving across the country or staying close to home, preparing in advance can make all the difference in helping you feel confident and in control as you navigate this new chapter.
This guide is here to help you take practical steps, like building a personalized treatment plan, managing prescriptions, connecting with campus resources, and educating those around you about HAE. You'll also find a real story from a student with HAE, helpful tips, and tools from the HAEA to support your journey. No matter where college takes you, you’re not alone. The HAEA community is here to help you thrive every step of the way.
To prepare for an extended time away from home, consider the following steps:
Before you leave for school, it is a good idea to collaborate with your HAE treating physician to create a comprehensive plan that should include the following:
Give yourself an extra feeling of independence by ensuring you are trained in self-administering HAE medications requiring an injection. If you are unable to self-administer, accommodations can be made for home-health nursing while you are at school. Contact your drug manufacturer HUB or your insurance company to learn about options available to you.
Tip: You can also order a free Cares Kit to receive resources and other HAE management tools!
Contact your insurance company or doctor to check if your prescription will expire while you're at school. If so, work with your doctor’s office to create a plan for renewing it while you're away.
Establish a plan to receive your HAE medication and supplies while you are away from home. To avoid running out of medication, you can keep track of your refill dates using the HAE TrackR app, which can be downloaded on the Apple App Store or Google Play Store.
Check in with your physician using either virtual or in-person visits. It may be best to schedule in-person visits when you return home for a break. Many insurance companies require you to schedule appointments with your physician at least once per year to approve your HAE medication.
When you go off to college, consider if you need medications delivered to a new address. Here are a few suggestions on how to ensure delivery to the correct address:
One way to ensure proper delivery of medication is by informing your pharmacy of any address changes or new delivery schedules.
It may be helpful to contact your school's mail service to learn about the process for receiving packages. Inquire about package drop-off locations and any signature requirements needed. Additionally, let the mail service know about the delivery of your medication, as some schools may dispose of packages labeled "refrigerate upon arrival" . By notifying your school mail services in advance, you can help ensure your package is handled properly, stored safely, and doesn't get misplaced.
The HAEA is here for you throughout your entire journey! Here are a few ways the HAEA and nearby physicians can offer support:
TIP: You can also order a free ER Tool Kit to receive resources and other HAE management tools!
If you are looking for a local HAE treating physician, the HAEA can provide referrals to knowledgeable physicians in your new area. To receive a referral, contact an HAEA Health Advocate at (866) 798-5598 or request a referral by visiting haea.org. Confirm that the physician accepts your insurance.
Consider finding an ER close to your residence or school. Contact them to determine if they stock HAE medications and inform them of your condition. Think about bringing an HAEA ER Toolkit along with your treatment plan. To order a free toolkit, visit haea.org, or use the QR code provided.
Insurance varies from state to state. It may be beneficial to review your options before going off to school. A few ways to do that include:
If moving out of state, assess whether your current healthcare plan covers you in your new location. If not, seek alternatives before moving to ensure your HAE medication and any urgent/emergency care is covered.
Many universities offer school-based insurance plans. If you need assistance evaluating insurance coverage on a school-based plan, reach out the the HAEA Health Advocates (866) 798-5598 or by visiting haea.org
It’s a good idea to have an open conversation with new roommates or friends about your HAE and the possibility of needing medication in an emergency.
If you feel comfortable, you can inform them of how to assist during an HAE emergency. Being transparent and open can provide those who care about you with a better understanding of your condition!
To build deeper relationships, you can invite your peers to ask questions to foster open dialogue and understanding.
Hi my name is Ally! When I went off to college, I was set on making myself be just like every other student. The truth is nobody is the same and we all have different life journeys and needs! I was scared to share my HAE diagnosis with friends, in fear of them looking at me differently. However, this has never happened. When I share my diagnosis, it has helped me build relationships and give my friends a more in depth understanding of who I am! It has also provided a sense of safety for me and others in case I ever experience a life-threatening attack. Sharing your HAE diagnosis is not a scary thing, it is empowering!
I also was nervous to utilize services offered to me, as I did not want my classmates to think I was “abusing the system” or taking the easy way out. The truth is HAE can be a struggle. Using services from the disability services office has helped give me an equal playing field with my peers. There have been multiple times I have had to leave class early or stop an exam to take my medication. These are experiences that not every student has to deal with. Without my accommodations, I would not have been able to succeed! Think about exploring the options your university provides!
