MAKE THE MOST OF COLLEGE WITH PH

“The 8 years I spent in school was the best time of my life!”
-Robert, PH patient


A group of students show off their Advances in PH journals at a PH event at the Western University of Health Sciences.A group of students show off their Advances in PH journals at a PH event at the Western University of Health Sciences.

Thinking about college is time-consuming for most teenagers. For a young person with pulmonary hypertension, the stress of the college application process can be even greater when you take into account health considerations, the logistics of moving away from your family and your local doctor, and the thought of adding an additional expense to a family budget that may already be over-extended due to costly medical bills.

Preparing for the medical, social and financial challenges of college life will help you advocate for yourself and stay knowledgeable about the services available to help you get the most out of your higher education. Read through the ideas below to start planning ahead! 

Do Your Research

Find the Funding That’s Right for You

If you know you’ll need assistance paying for college, complete the Federal Application for Federal Student Aid (FAFSA) in a timely manner. The FAFSA is required to qualify for federal loans and grants, as well as the funding programs at many universities and private foundations. There are also resources available online to make college more affordable for students living with a chronic illness. PH patients looking to continue their education in college or graduate school can take advantage of many of these grants, scholarships and loans. Check out some of these websites as you begin your search:

Know Your Health Plan

Talk to your current insurance provider to ensure you understand your coverage as you make this transition. If you're on your parent's insurance plan, your insurance company is now required to continue your coverage until you turn 26, even if you are no longer living with your parents, a dependent on your parent's tax return, or a registered student. The extension of coverage until the age of 26 is a recent change that is required for plans or policy years that begin on or after September 23, 2010. You should check with your insurance provider before you head off to school to double-check that your plan has updated its policy.

Also make sure you know the answers to the following questions:

  • Will the policy cover emergency services out-of-state?
  • What kind of documentation does the insurance company require from you if you use emergency services, and in what time-frame?
  • Will the policy cover routine medical visits out of state?
  • Does your school require that you purchase an additional student health plan?

Investigate Campus Services

Most campuses offer some sort of Disability Support Services (DSS) to help you arrange for services that can make your life easier as you adjust to life on campus. If possible, investigate these services during your college search. If you’re already enrolled at a university, search your school’s website or campus directory for “disability services” to find the person to speak with about accommodating your PH-related needs.

Most schools can help you address your special dietary restrictions at the dining hall, and help arrange for notifications to professors about the need for note-taking help or extensions on exams and papers in the event you miss classes for medical visits, centrally-located housing if you’ll be away from home, handicapped parking, or transportation around campus so you don’t have to walk long distances.

Plan Ahead

Make a Plan for Your Health

If you and your parents have determined with your doctor that your health is stable enough for you to go away from home for school, work with your doctor to create a medical plan for the school year. Talk to your doctor about your concerns, and decide how you’ll handle severe symptoms or medical emergencies while you’re away.

Schedule appointments in advance so they fall during your semester breaks. It might be a good idea to find a PH specialist near your school in the event of an emergency. If you can, meet with this specialist before the school year begins so you can establish a relationship. Finally, make sure you have copies of all your important medical records with you at school, including extra copies of all your prescriptions.

Make a Plan for Your Education

Time management skills are essential for all successful college students, but for PH patients, planning ahead is indispensable to staying on top of a heavy workload. When your semester begins, collect your syllabi and use them to plan for the coming months on a calendar.

If you anticipate problems completing certain assignments on time due to multiple deadlines or medical appointments, talk to your professors in advance. According to Sean, a college student living with PH, “If you personally go to them and let them know about your condition, they tend to be more willing to work with you if, say, you have a doctor’s appointment that you can’t reschedule.” Sean recommends building relationships with professors by visiting them during office hours and by showing up to class early or staying a little late.

Strike a Balance Between Work, Play and Rest

Have Fun, but Know Your Limits

Sean advises, “College is supposed to be a learning experience. Focus on your classes, and don’t party too hard. Having PH isn’t like having a cold, and partying too hard can highly affect your grades if you aren’t getting the rest you need to maintain healthy study habits.”

Be true to yourself and learn to say no to activities you don’t have the energy for. Some PH patients choose to take only one or two classes at a time to make sure they have the energy and concentration to devote to their studies. Do what works for you.

Remember: You Call the Shots

College is a time for meeting new people and trying new things. That doesn’t mean you give up all rights to decide who you spend time with, who you confide in and what you do.

You are in control of your life. You can choose who you tell about your PH, and how you tell them. You can decide whether one night of sleep deprivation is worth the lag in energy the next day.

College is about more than classes — the decisions you make in school will help arm you with the experience and self-awareness to help you manage a balanced, fulfilling life with PH in your 20s and beyond.


The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.