Tips for Navigating College with a Rare Disease

With the end of the school year upon us, you may be starting to think more about college. Maybe you are starting this fall, or are getting ready to apply. Having a rare disease can make this already-stressful process even more difficult. Here are some tips to help you succeed in college while also managing a rare disease.

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Applying and choosing the right school

When choosing which schools to apply to, in addition to academics and other features that interest you, you will need to consider accessibility. Public and private postsecondary institutions are required by law to provide students with disabilities equal access to all of their programs. However, you should still research the school to see exactly what they offer in terms of accomodations. Look on their website to see if they have a page for their office of accessibility and read about the services they provide.

You should also go on tours in person, if you are able to. This will give you the best idea of how the college is dedicated to assisting students with disabilities. Ask your tour guide if they know anything about the topic or can direct you to someone who does. Sometimes, colleges that have older buildings may not be completely accessible to students who use mobility aids. There may still be some buildings on campus that can only be accessed by stairs, or ones that do not have elevators. 

If touring in-person isn’t an option, try looking on YouTube for videos of the campus. Oftentimes, people will make videos of them walking around for prospective students. It is also common for college students to record videos documenting a day in their life. This has two benefits: you will get to see the inside of many buildings that might not be shown on a tour, and you will learn more about student life. 

Financing your education is a concern for many. Having to pay for college on top of the costs of whatever medications or medical services you are receiving can be daunting. However, many private colleges require students applying for financial aid to fill out the CSS Profile, which is offered by CollegeBoard. Their website has a list of institutions that require the CSS Profile for both domestic and international students. This form asks questions related to family income and expenses, and also includes a section to list the cost of medical bills the family had for the year. The school will take this into consideration when determining your financial aid package. You can always try to negotiate with schools to lower your bill so you may be able to attend the school. You can provide more information about your situation. Alternatively, if another school of a similar caliber offered you a better aid package, you can ask the school you want to attend to match the package. 

There are plenty of scholarships available for students with disabilities as well; doing a quick Google search should show some options. The  #RAREis scholarship, which is offered by the EveryLife Foundation for Rare Diseases, grants $5,000 each to up to 35 people each cycle. Due to a recent donation, they were able to provide scholarships to up to 53 students this year. The application for the Fall 2022 semester is already closed, but you can apply next year. The Patient Advocate Foundation offers scholarships to people under the age of 25 who have been diagnosed with cancer or a chronic disease. The application for the 2023-2024 academic year opens on October 14, 2022. 

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Move-in

Move-in is a very hectic time of the school year. Hundreds, if not thousands of students are all on campus at the same time trying to move all of their belongings for the next few months. If you have any concerns about this, try asking to move in at a different time. It is nearly impossible to catch the elevator on move-in day due to the sheer number of people who are also trying to use it, so if you live on an upper floor and require the elevator, it may be better to come a bit earlier or later in the day. 

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Residential life

It is best to ask for a housing accommodation as soon as possible, especially if your school doesn’t generally offer single occupancy rooms to freshmen. If you are too late, you may be added to a waiting list. In the meantime, you could be placed in a room that doesn’t properly fit all of your needs. 

If you have a roommate and are concerned about them respecting any boundaries you may need to set, communicate with them early on in the semester. Some schools require roommates to fill out a form together outlining how they plan to share a living space, so this is a great opportunity to let them know any useful information. For example, if you need the room to be available as a quiet place to rest or have expensive medical equipment you do not want them to touch, you have to let them know. Also, remember that you have no obligation to share more information than you are comfortable sharing about yourself and your condition. This applies not just to roommates but to anyone you encounter. While it is always great for people to be more educated on the rare disease community, it does not have to be your responsibility to teach them if you do not want it to be. Again, setting boundaries is imperative. 

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Dining

If you have any dietary restrictions, check with the dining hall to ensure that they can provide you with food that is safe to eat. A lot of schools have stations that prepare food specifically without any cross-contamination with some of the major allergens. If you do not feel comfortable eating food prepared by the staff, you could always bring your own food into the dining hall so that you can still sit and eat with friends. If you know that you will not be utilizing your school’s meal plan, make sure to remove yourself from it to avoid the unnecessary cost.

For people with very strict diets such as the elimination diet, it could be difficult to be surrounded by so much food that you are not able to eat. If this is the case, ask your friends if they want to find another place to eat together.

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Academics

There are a variety of academic accommodations that you can request from your school, depending on your specific situation. If you ever need extensions for assignments or don’t feel well enough to come to class, make sure to be in communication with your professors. They cannot help you if they do not know what you need from them. Hopefully, you will never come across a professor who is unwilling to grant you the accommodations that you are entitled to. If it does happen, though, reach out to another staff member who you are familiar with, whether that be a dean or someone in the office of accessibility. 

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Getting involved with rare disease on campus

‍Students for Rare is a program created by the National Organization for Rare Disorders (NORD). Its goal is to increase awareness surrounding rare diseases and provide opportunities for students to become more involved. You can apply to start a club at the high school level or a chapter in college. Program details and the requirements of starting a group at your school are available on their website. Whether you are planning to pursue a career in rare disease or you just want to meet other like-minded students, this program provides an excellent opportunity to do both.

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Takeaways

While having a rare disease does often make for a unique college experience, it does not mean that you cannot have a great time. As long as you do your research and ask questions if you ever need anything, you will be set up for success.