This article explains how college handles health and disability differently from high school, why a few hours of planning are worth it even if you feel completely well, and why “should I tell them?” is really four separate questions with four separate answers. It provides background and vocabulary, not medical, legal, or admissions advice. What you share, and what you set up before you leave, is worked out with your parent or guardian, your care team, your school counselor, and, if you choose to contact them, the college’s own offices.

What changes between high school and college

In high school, if you have a 504 plan, the school is responsible for it: someone there identified you, evaluated you, and wrote the plan. (A separate PKD Bridge article addresses 504 plans and school accommodations.)

In college, that flips. Federal disability protections still apply to qualified college students, but a college is not required to identify you or work out what you need. If you want academic adjustments, you identify yourself and ask, usually through an office called disability services or something similar.[1] The college can ask for documentation and can set reasonable standards for it, so a high school 504 plan may help but is generally not enough on its own.[1] It also does not have to lower or substantially change its essential academic requirements; adjustments change how you access the work, not whether you do it.[1]

Two things follow. You are not required to tell a college that you have a disability, in the application or afterward; but if you want an academic adjustment, or another disability-related accommodation such as accessible housing, you identify yourself and go through the college’s process.[1] And the office that handles accommodations is usually not the office that gives you a flu shot. Disability services and the campus health center have different jobs and are usually different doors, though a particular college may organize them differently.

Why this can matter even if you feel fine

If you feel well most of the time, it is fair to ask why this needs planning. Three reasons.

First, your follow-up needs a plan if college changes where you live. The 2025 international ADPKD guideline says everyone diagnosed with or at risk for ADPKD should have a planned transition into adult care as they reach young adulthood, and guidance for inherited kidney conditions says that planning, including who takes over your care, should happen before transfer, not after.[2,3] Neither is about college as such. But for someone who feels fine, the risk is not that college goes badly because of ADPKD. It is that the blood pressure checks quietly stop because nobody arranged them in the new city. (A separate PKD Bridge article addresses moving to adult kidney care.)

Second, chronic illness can get in the way of school in ways that add up quietly. A review of research on children with chronic kidney disease finds that, across the range of severity, they are at risk for school-related difficulties, including missing a lot of school, and that planning for education after high school is worth starting early.[4] That research covers kidney disease more advanced than most teenagers with ADPKD have, so it is not a forecast for you. But in the international ADPKD interviews, adolescents did describe pain and tiredness, and some said they had missed or left school because of ADPKD, so the point carries over.[5]

Third, do not assume the college will find you. In a survey of medical directors at a representative sample of U.S. four-year colleges, 42 percent said their health center had no system to identify incoming students with chronic medical conditions, and only about a quarter reached out to those students for a first appointment, although many could provide care once a student showed up.[6] At a lot of colleges, if the health center knows you exist, it is because you or your family told them.

Four decisions, not one

“Should I tell them?” sounds like one question. On a college application it is at least four, and they do not have to get the same answer.

The essay. Admissions readers see it. Whether ADPKD belongs there is a writing decision, not a health one. For some people it is a real story; for others it is a fact about their life, not the story of their life, and the essay is about something else. Application platforms usually also have optional spaces for context. The 2025–26 Common App, for example, had a “Challenges and Circumstances” question, with physical health among the listed circumstances, and an Additional Information section, where a student can briefly explain something that affected their record.[7] The questions change, so check the current application. Those spaces are for context, not confession, and they are optional. Nothing written in an essay or a context box gets you accommodations; it goes to admissions, not to disability services.[1]

Disability services. This is the door for accommodations, and it usually opens after you are admitted. Asking is voluntary, your decision, and separate from the application.[1] You can ask at any time, but federal guidance says to ask early, because reviewing documentation and setting things up takes time.[1] It is also not all-or-nothing: ask the office how it handles a condition that flares and then goes quiet, and what, if anything, it tells your instructors. Practices vary by college.

Campus health. This is the door for the medical side: where blood pressure might get checked if that is part of your care, where a prescription might get refilled, where you might go first when something is wrong. What a health center can do, and when, varies, so check rather than assume.[6] Some colleges ask incoming students for a health history form.[6] Answer what it asks accurately. Where a question is optional, or you are not sure what it is asking about ADPKD or family history, work that out with your parent or guardian and your clinician.

Roommates and friends. Your roommate and friends do not automatically need to know; telling them is your decision. It is the same decision as telling a friend in high school, with the same reasons for and against. (A separate PKD Bridge article addresses disclosure conversations.) The one college-specific point: a roommate might be there if you are in pain at night, and some people decide that is a reason to say something short. Others do not. Both are fine.

Keep these apart, because they leak into each other if you let them. An essay about ADPKD does not mean you have to register with disability services. Registering does not mean your roommate knows.

A planning list for the year before you go

None of this is required. These are things easier to sort out from a kitchen table than a dorm room; you and your family can decide which apply.

  • Who sees you, and where. If you are moving away, ask your care team whether visits stay with them (home on breaks), move to a clinician near campus, or both, and how the hand-off works.[2,3] This is the one item the guidelines are explicit about: plan the transition before transfer, not after. How that fits with where you go to college is worked out case by case.
  • Medications, if you take any. How refills work when your pharmacy is 400 miles away.
  • A one-page summary. Diagnosis, family history, medications, your care team’s contact information, and the clinic you are being handed to, if there is one. Guidance for inherited kidney conditions recommends a detailed referral report for the adult clinician anyway; ask whether you can have a copy, and keep your own short version.[3]
  • Insurance. How you are covered at school and whether the campus health center takes your plan. One for your parent or guardian.
  • Disability services. You do not have to ask for academic adjustments before you apply, but it is worth learning the college’s process, what documentation it asks for, and how long it takes, before you need it.[1]
  • The tests. A high school 504 plan does not automatically provide accommodations on College Board tests such as the SAT or AP exams, or on the ACT; each testing organization uses its own approval process.[8,9]

If ADPKD runs in your family and you have not been tested

This article is for you too, with one adjustment. With no diagnosis, the essay, disability services, and roommate questions mostly answer themselves, because a family history is not a diagnosis. Campus health does not. Guidance treats young people at risk for ADPKD as needing follow-up too, mostly regular blood pressure checks and a planned transition into adult care, and that follow-up has to survive the move as much as anyone’s.[2] If a college health form asks about family history, answer it accurately; if you are not sure what it is asking, ask your parent or guardian and your clinician. Whether and when to be tested stays a separate, carefully weighed decision, and nothing about applying to college settles it.[2,3] A health form should not decide it for you.

People who may be able to help

  • Your parent or guardian. For most of the planning list they currently hold the answers: insurance, prescriptions, what the clinic said last time. Planning together is where those answers start moving to you.
  • Your school counselor. College counselors who work with incoming students with chronic illnesses point to high school counselors as the people who can help students think ahead about the medical, academic, and social sides of the move, not only the application.[10] Your counselor may also write a recommendation or school report; what they know, and what they would say, is worth a direct conversation.
  • Your kidney doctor or care team. They decide with you what follow-up looks like at college, whether you need a clinician near campus, and what goes in the referral report if you are being handed to someone new.[2,3] They are also the ones to ask what a new clinician or a college health center actually needs to know.
  • The college’s disability-services office. You can contact them before you decide anything, even before you apply, to ask how the process works. Asking is not registering.[1]
  • The campus health center. Same. Asking whether they can check blood pressure or coordinate with an outside nephrologist is information, not a commitment.

How to start the conversation

With your counselor, start with the application. “I have a kidney condition. I have not decided whether it goes anywhere in my application. Can we talk about where it could go, and what you would say if I asked you not to mention it?” That gets the essay and the recommendation into one conversation.

With your clinician, start with geography. “I am applying to schools in three states. What happens to my follow-up if I end up far away?”

With your parent or guardian, start with the list. Sort the planning list into “done,” “not done,” and “I did not know that was a thing.” The third pile is the useful one.

Questions worth asking

For your clinician:

  • Will you keep seeing me while I am at college, or should I have someone near campus?
  • If something happens at school, who do I call first: you, campus health, or an emergency room?

For your school counselor:

  • If I decide to write about ADPKD, where in the application makes sense, and where does it not?
  • What do you plan to say about me, and does my health come into it?

For a college’s disability-services office, if you decide to contact them:

  • What documentation do you ask for, and does a high school 504 plan help?
  • If I register and then do not need anything for a while, is that a problem?

For a parent or guardian:

  • How am I covered at school, and what do you handle for my care now that I should learn before I go?

For yourself:

  • Which of the four decisions do I already have an answer for, and which am I answering by accident?

When to bring in your care team

Most of this is planning, not urgency. A few things belong at an appointment.

  • Before you leave, if nobody has said out loud who will be checking your blood pressure while you are away. Ask your care team how that continues after the move.[2,3]
  • If you have new or worsening symptoms at any point, before trying to plan around them.
  • If you have been skipping visits, or stopped a medication because it seemed pointless, and you are about to move. Saying so is not a confession; those are exactly the gaps transition planning is meant to prevent.[3]
  • If you are unsure what a college health form is asking for. That is a clinician question, not a guess.

Things to think about before deciding

Privacy. Different forms go to different offices, with different rules, and an admissions form, a disability-services record, and a health-center record are not handled the same way. Before adding something optional, ask who will see it and what it is for, and write only what you were willing to have read.

Timing. Nothing about disability services or campus health has to be decided before you apply, and most of it can wait until you know where you are going. The exception is your follow-up care, which should not be left unplanned.

They are separate. Essay, disability services, campus health, roommate. Four decisions. You can answer yes to one and no to the other three.

It can change. You can ask disability services for adjustments at any time, but they may not be in place immediately, which is why the federal guidance says to ask early once you know you need them.[1] If you wait and then have a hard semester, you can still ask, but the adjustment may not arrive in time to fix what has already happened.[1]

Distance. Some people with ADPKD choose a school near their clinic; some choose the farthest one they got into and sort out follow-up there. Worth avoiding: choosing based on a health limit nobody has actually put on you. Ask your clinician what, if anything, distance changes.

What this can feel like

Applying to college is a lot even without a kidney condition. Adding one can feel like a second application running underneath the first, with forms nobody else has to fill out.

Some of it is the high school worry in a new place: that a box on a form will make you look fragile, that a roommate will treat you differently. Adolescents with ADPKD in the international interviews described holding back from things to avoid being teased or feeling different, and worry about what the condition would mean for them later, and college has a way of putting “later” closer.[5] Young people with chronic illnesses asked about disclosure described the choice as trust on one side and fear of being seen differently on the other, with the balance shifting by person and setting.[11] It is allowed to shift.

Some of it is bigger: leaving the clinic you grew up with, the parent who kept track of everything, the town where people already knew. Young adults who grew up with kidney disease have described independence arriving late and an uncertain future, but also a determination not to miss out on what their peers were doing.[12] Those were young adults with childhood-onset kidney disease, most of it more advanced than most teenagers with ADPKD have, so their experience is not a forecast, but the mix of feelings may be familiar.

And some of it, for some people, is relief. Four decisions that are yours, on your timeline, is more control than a lot of this has ever offered.

If any of this is sitting heavily, say so to a parent or guardian, your counselor, or your care team.

The bottom line

College treats health and disability differently from high school: it generally will not identify you or work out what you need, so if you want academic adjustments, you ask.[1] Medical care is a separate door. For someone with ADPKD who feels well, an important planning step is not a disclosure question at all. It is making sure your follow-up, especially blood pressure, has a plan through the move, which the transition guidance says should be settled before transfer.[2,3] Everything else, the essay, disability services, the health form, the roommate, is four separate decisions, each with its own purpose and timing, most of them later than you think.

This article provides educational information to help you begin a conversation. It is not medical advice, legal advice, admissions advice, school advocacy, counseling, or crisis support. There is very little research on adolescents with ADPKD and college specifically. Some of what is here comes from federal guidance for students with disabilities entering college, some from research on college health services and on students with chronic illnesses generally, and some from research on young people with more advanced kidney disease, so it should be used cautiously as a starting point. For individualized decisions, talk with your parent or guardian, your clinician, your school counselor, and, for anything involving a specific college’s process, that college’s disability-services office or health center.

References

  1. U.S. Department of Education, Office for Civil Rights. Students with Disabilities Preparing for Postsecondary Education. 2011. Available from: https://www.ed.gov/higher-education/students-disabilities-preparing-postsecondary-education [accessed July 14, 2026]
  2. Devuyst O, Ahn C, Barten TRM, Brosnahan G, Cadnapaphornchai MA, Chapman AB, Cornec-Le Gall E, Drenth JPH, Gansevoort RT, Harris PC, Harris T, Horie S, Liebau MC, Liew M, Mallett AJ, Mei C, Mekahli D, Odland D, Ong ACM, Onuchic LF, Pei YPC, Perrone RD, Rangan GK, Rayner B, Torra R, Mustafa R, Torres VE. KDIGO 2025 Clinical Practice Guideline for the Evaluation, Management, and Treatment of Autosomal Dominant Polycystic Kidney Disease (ADPKD). Kidney Int 2025 Feb;107(2S):S1–S239. doi: 10.1016/j.kint.2024.07.009
  3. Perez Gomez MV, Costea G-C, Claus L, Cornec-Le Gall E, van Eerde AM, Lemoine S, Groothoff J, Levtchenko E, Klein L, Pape L, Müller R-U, Liebau MC. Transition of patients with hereditary nephropathies from paediatric to adult care. Nephrol Dial Transplant 2026 Jan 30;41(2):367–379. doi: 10.1093/ndt/gfaf186
  4. Richardson K, Ward RC, Harshman LA. Education and employment outcomes in pediatric chronic kidney disease. Pediatr Nephrol 2024 Dec;39(12):3411–3423. doi: 10.1007/s00467-024-06431-4
  5. Oberdhan D, Schaefer F, Cole JC, Palsgrove AC, Dandurand A, Guay-Woodford L. Polycystic Kidney Disease–Related Disease Burden in Adolescents With Autosomal Dominant Polycystic Kidney Disease: An International Qualitative Study. Kidney Med 2022 Mar;4(3):100415. doi: 10.1016/j.xkme.2022.100415
  6. Lemly DC, Lawlor K, Scherer EA, Kelemen S, Weitzman ER. College Health Service Capacity to Support Youth With Chronic Medical Conditions. Pediatrics 2014 Nov 1;134(5):885–891. doi: 10.1542/peds.2014-1304
  7. Common App. What’s new with Common App: 2025–26 updates. 2025. Available from: https://www.commonapp.org/files/Whats-New-25-26.pdf [accessed Sept 5, 2026]
  8. College Board. If the student has an IEP or 504 plan in place, do they still need to submit a request for accommodation? Available from: https://accommodations.collegeboard.org/help-center/if-student-has-iep-or-504-plan-place-do-they-still-need-submit-request-accommodation [accessed July 14, 2026]
  9. ACT. Requesting Accommodations for the ACT Test. Available from: https://www.act.org/content/act/en/products-and-services/the-act/registration/accommodations.html [accessed July 14, 2026]
  10. Davis ES, Paro C. Preparing High School Students With Chronic Illnesses for College Transition: Lessons Learned From College Counselors. Prof Sch Couns 2020 Mar 12;23(1):2156759X20907070. doi: 10.1177/2156759X20907070
  11. Kaushansky D, Cox J, Dodson C, McNeeley M, Kumar S, Iverson E. Living a secret: Disclosure among adolescents and young adults with chronic illnesses. Chronic Illn 2017 Mar;13(1):49–61. doi: 10.1177/1742395316655855
  12. Kerklaan J, Hannan E, Hanson C, Guha C, Cho Y, Christian M, Hamiwka L, Ryan J, Sinha A, Wong G, Craig J, Groothoff J, Tong A. Perspectives on life participation by young adults with chronic kidney disease: an interview study. BMJ Open 2020 Oct;10(10):e037840. doi: 10.1136/bmjopen-2020-037840