Top 10 action items for college-bound teens with lupus

Lupus Foundation of America

Resource Content

If you’re a teen with lupus heading to college, there are a few things you’ll need to prepare for beyond choosing your classes and shopping for dorm decorations. Living away from home for the first time means more responsibility—especially when it comes to your health. So before you load up that moving truck, add these 10 action items to your “Must Do” list, and make sure your first year is the best it can be.

1. Find a rheumatologist in the city where your college is located.

You’ll want to make sure you continue getting regular medical follow-ups (including lab work and physical exams), since it’s as important as ever to prevent lupus flares. Once you’ve found a rheumatologist in the area, you will be able to start scheduling your own doctor appointments (so you can fit them into your class schedule), managing your prescriptions and refills, and deciding when to go to the clinic for treatments.  

Q/A: Steps to take

Ask your current rheumatologist to help you find another rheumatologist in the city or town where you’ll be living who can help you keep an eye on your health during school terms. You’ll want someone in your health insurance network. If you’re not sure, the office staff can look this up for you or you can check the insurer’s website or call their toll-free number.
Call the new rheumatologist’s office well in advance to schedule an introductory appointment, since this can take weeks or sometimes months.
Ask your current rheumatologist to send your medical records and a medical summary to the new rheumatologist; ask for a second copy to be sent to you, and a third copy to the college health center.
It’s also a good idea to call the new doctor’s office a few weeks before the appointment to make sure the paperwork has arrived and is on file.
Ask your current rheumatologist if she/he would like to see you when you’re back at home during school holidays and breaks.

2. If you’re attending college away from your home town, arrange a way to get your prescribed medications.

Your medications are designed to control lupus symptoms. Some of these medications take time to begin to have an effect and some must be stopped gradually so your body can adjust to functioning without them. It’s never a good idea to stop taking any medications without prior planning—you’ll only want to make any changes to your medication routine with guidance from your doctor.

Q/A: Steps to take

Check to see if the student health center has a pharmacy that can fill your prescriptions. If so, ask your current pharmacy to transfer your prescriptions there. Your current rheumatologist can also transfer the prescriptions, but you’ll need to give him/her the contact information of the new pharmacy.
Some local pharmacies may have a delivery service that will meet you at a pre-arranged location on campus.
There are prescription medication mail order services that will deliver to your campus mailbox. Make sure you arrange for a text or phone message to alert you that the package has been sent and its expected arrival date.
Set an alert on your smartphone to remind you when refills will be needed. Or set up an auto-reminder with the pharmacy.

3. Make sure your emergency contact information card is up-to-date.

There may be things about your health that are crucial for emergency responders to know. You’ll want the people taking care of you to know that you have lupus, which medications you’re taking, the name of your insurance carrier, and who to contact if you ever have a health emergency.

>>List of services that provide free printable medical alert cards

Q/A: Steps to take

If you don’t currently have an emergency contact card in your wallet or on your smartphone, use a free service online to create one. When it’s completed, scan it and add it to your smartphone; print out a copy for your wallet, too. If you have a new rheumatologist in the city where you’re attending college, this information will be required on the “New Patient” forms, so you’ll want to have it with you.
Make sure your parents, the Resident Advisor (RA) at your dorm, and your rheumatologist all have a copy of the card. It’s also a good idea to have this card on file at the student health center.

4. Complete the HIPAA (Health Insurance Portability and Accountability Act of 1996) Authorization form.

Once you turn 18, no one can access your medical information without your permission. This form allows you to designate which people are allowed to see your medical information.  

>>Download a HIPAA release form

>>What you need to know about health information privacy

Q/A: Steps to take

Complete the form (don’t forget to sign and date it), scan it and add it to your smartphone.
Distribute copies to everyone who you’ve listed on the form—for example, your parents and your RA. It’s also a good idea to have this on file at the campus health center.

5. Know the early warning signs of infection, blood clots, heart or kidney disease, and other lupus-related complications.

People with lupus are more likely to have heart, lung, kidney, and blood complications. Infections are more common too. When you know the warning signs that lupus is affecting these organ systems or that an infection is beginning, you can alert your rheumatologist and any other health care providers.

Q/A: Steps to take

Ask your rheumatologist for the most important warning signs of lupus-related health problems, as well as what he/she wants you to do if you suspect a problem.
Keep a record of your health status—a daily (or at least weekly) “self check-up” will help you catch any issues before they turn into problems. You can set a reminder on your phone so you don’t forget.
Know the most common side effects of your medications—especially anything new that you’re taking—so you can tell the difference between a side effect and any new symptoms related to your lupus. Either way, your doctor will want to know.

6. Know the triggers that can lead to a lupus flare for you.

Lupus is an unpredictable disease—sometimes you may feel fine, and other times your symptoms might suddenly worsen. In lupus, this is called a disease flare. The sooner you recognize the signals of a flare, the sooner you’ll be able to get help and prevent damage to your tissues and organs.

Q/A: Steps to take

Think about the last time you had a flare. What was going on in your life when it happened? Can you think of any event that might have caused it?
Lupus flares can be triggered by different kinds of stress to your body and mind, including not getting enough sleep, not eating well, feeling overwhelmed, too much sun exposure, and use of alcohol, drugs, and tobacco.
Sometimes people stop taking their medications because they’re feeling better, or because they hate the side effects. However, lupus will flare once your body is no longer protected by those medications. If you have questions about a medication you’re taking, make sure you ask your doctor.
Keep your flare triggers in mind as you plan activities—this will help you avoid missing class or other commitments, or having to take stronger medication.
If you’re having trouble avoiding your lupus flare triggers, ask your rheumatologist for advice.

7. Decide which people on campus you want to know about your lupus diagnosis.

No one expects you to broadcast the fact that you have lupus to the whole campus. But there are certain individuals who will be better able to support you if they know you may need certain accommodations.

Q/A: Steps to take

Think about the situations that might require you to ask for help. For example, you might have to miss a class or a test, or you might need extra time to finish writing an essay. The people who could help you may include your dorm RA, your roommates, your academic advisor, your professors, other students, and staff at the student health center.
If you have a part-time job, you may also want to tell your supervisor or Human Resources manager. Under the Americans with Disabilities Act (ADA) you’re entitled to accommodations at the workplace that will help you do your job, but you have to ask for the accommodations and explain why you think they’re necessary. If you share a little bit about how lupus affects you, it will be easier for the HR manager to fill your request.

8. Think about ways to make your first-year schedule manageable.

College life is often hectic, especially if you’re juggling a part-time job, extracurricular commitments, and social activities along with all your classes. But overextending yourself— saying “yes” to every activity while trying to keep up with your course assignments—is the surest way to bring on a lupus flare.

Q/A: Steps to take

Make an appointment to talk to your academic advisor about a class load that will allow you to have down time while still fulfilling graduation requirements within the allowed time frame.
Whenever possible, take your hardest classes at the time of day when you usually feel your best. Ask classmates to share notes with you in case you’re absent.
Take a look at all the other activities that will make up your daily routine, and try to make sure you’ve included time to rest each day.
Movie nights with friends, dating, attending college sports events, and other social activities can help you keep a balance between class work and fun.
Think about the best way you can consistently eat healthy foods, and look for ways to fit in daily exercise. Above all, make it a priority to get enough sleep every night.

9. Register with the student accessibility office on campus.

Besides causing physical complications, lupus can also affect your brain functions—sometimes it can cause difficulty processing thoughts, difficulty concentrating, and memory loss. Whether you need help with something physical or something cognitive, the staff at student accessibility office can help.

Q/A: Steps to take

Find out if there’s time for you to stop by this office during your orientation. That way you won’t have to scramble to get registered if you have a need during the semester.
Be prepared to explain the ways that lupus might or does affect your ability to accomplish your coursework or get to your classes. Examples might be back-to-back classes in buildings that are a long distance from each other or a building with a great number of stairs that are hard for you to climb, or that you need extra time for written assignments because it can take you longer to put your thoughts into words.
If anything changes with your contact information or class schedule, let the office staff know.

10. Know who to talk to if you need emotional support.

Your first year of college can be one of the best times of your life. But this may also be one of the most challenging times of your life with lupus. It’s easy to get overwhelmed, especially if lupus becomes active and you can’t work as hard as you’d like to. If you start feeling frustrated or depressed and the feelings don’t go away, please ask for help. 

Q/A: Steps to take

Whether you need moral support or just want to vent, think about who you can turn to. Your support network may include your parents and other relatives, your closest friends, a mentor at your job or faith-based organization, and your health care providers. You can also talk to your college advisor, your professors or other instructors, and staff members at the accessibility office.
Keep in touch with your network with social media updates, texts, or emails—let them know you’re thinking of them and you’re glad they’re part of your support team.
If you’d prefer to talk to a trained psychologist or therapist, ask who would be available at the campus health center. Or you can search for a local mental health professional who’s in your health insurance network. Most insurance will pay a portion of the cost of counseling sessions.
The Lupus Foundation of America (LFA) has trained health educators who are available during business hours to answer questions, offer suggestions, or just listen. You can reach them online or by phone at 1-800-558-0121. Leave a message to schedule a return call. There also may be a local lupus support group run by a chapter of the LFA.
Finally, please know that every staff member at your college is there for one purpose—to help you succeed. They expect students to reach out, and will do everything they can to provide help.