Talking to your school about your sickle cell disease

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Find out why it is important to talk to your school about your sickle cell disease and learn about the accommodations that may be available at your middle or high school, college or university.

Key points

  • If you are in middle school or high school, tell your teachers about your sickle cell disease as early as possible so that you can arrange an individual learning or education plan.
  • If you are at college or university, contact accessibility services for support as early as possible and tell your professors about your condition before it starts interfering with your progress.
  • Telling your school about your sickle cell disease helps you succeed in school and better manage your sickle cell disease.

It is important to communicate with your school. Let them know you have sickle cell disease and how it could affect your schooling.

Do I need to tell my teachers or professors about my sickle cell disease?

Yes, it’s a good idea to disclose your medical condition if it’s likely to affect your attendance or performance. Some schools need a letter or other document from your health-care team to verify that you have sickle cell disease.

Telling your school about your sickle cell disease gives you a better chance of long-term success, both at school and in managing your sickle cell disease.

  • Your teacher needs to know if you must miss classes to go to appointments or get some rest when you are not feeling well.
  • You may need to ask your teacher to give you work that you can do at home so that you don’t fall behind during any hospital stays or other absences.
  • If you are open with your school about your health, they can connect you with staff who specialize in helping students with medical needs. Be sure to communicate with these school staff about anything you need.
  • Consider asking a guidance counsellor or academic advisor to be an advocate for you. This means they can help you communicate with your teachers and help you balance your workload between different classes.

Sharing information as a middle school or high school student

Group of 3 teens sitting around a desk in a classroom and holding tablets. Two of the teens look at the third teen

Depending on how your symptoms affect you, you might have an individual education or learning plan in place. An individual learning plan is a written plan describing the education programs or services that you might need to help you succeed at school.

Individual education or learning plans vary by where you live and may have different names. Find out about the plans that are available in your area.

Many people with sickle cell disease have an individual learning plan. The fact that you may need an individual learning plan at school does not stop you from going to college or university.

Here are some sample accommodations that may be available in an individual learning plan:

  • Extra time to complete classroom assignments
  • Recordings of lessons so you can review them later
  • Handouts of notes or copies of the teacher’s notes
  • An extra set of books so you don’t need to carry them to and from school
  • Services of a note taker—a person who writes for you when you can’t

Think about how school is going for you and whether there is anything that would help you be more successful there. If you come up with some ideas, this would be a good opportunity to schedule a meeting with your school to talk about them.

Sharing information as a college or university student

Students in uniforms of button-down shirts, blazers and skirts or dress pants sitting at desks in a classroom

Most schools have a dedicated disability and learning resource centre or accessibility office for students who have medical conditions, including sickle cell disease. This office is designed to help you reach your academic potential. Staff there can suggest accommodations such as adjustments to your coursework, a note-taking program and changes to how you complete your exams.

Even if you feel like you won’t have any academic issues because of your health, it’s good to contact the college’s or university’s accessibility office as early as possible. At least this way they are already familiar with you in case you have difficulty later in the term. Though it is very helpful to register with your school’s accessibility office before the semester starts, you can still seek their help at any time in the academic year.

Your college’s or university’s accessibility services are generally well advertised on their website. Once you get in touch with accessibility services, also consider talking to your professors early in the term about any accommodations you may need.

There are a lot of benefits to taking a pro-active approach to academic life. The main one is that it is a lot less stressful to communicate about your health and any related needs before you start having difficulty and miss classes.

Don’t be embarrassed about seeking out help from your college or university. They are there to help you and many other students. Be sure to check out the services offered by the specific schools that you are interested in!

Last updated: January 4th 2024