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Tips for teachers of students with a rare disease

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February 28 is Rare Disease Day. You may go years without having a student with a rare disease in your class or even your school, but the longer you teach the greater the chance that you will have a student with a rare disease or disorder. According to the National Organizations for Rare Disorders (NORD), a disease/disorder is considered rare in the United States if is occurs in less than 200,000 Americans. There are approximately 6,800 different diseases/disorders that fall into the rare category. Some rare diseases may surprise you because we hear so much about them, while others you have probably never heard of at all. For a list of rare disorders go to http://www.rarediseases.org/rare-disease-information/rare-diseases

  • If you have a student with a rare disease your best resource is the student's parents/caregivers. The parents/caregivers will know information about the disease, but will also be able to tell you how that disease effects their child. They will be able to give you information about how often their child usually has doctors' appointments, how illness can effect their child, and any special dietary or physical needs.
  • Don't be embarrassed to admit you don't know much about the disease/disorder. Parents/caregivers are far less likely to be upset by a teacher who admits they need more information than the a teacher who pretends to know and puts their child's health at risk.
  • Do some research. Again, the parents/caregivers can probably give you resources (websites, books, magazine articles) to read, just ask. If you want even more information going to the NORD website can be a great place to begin.
  • What if the diagnosis is brand new and the parents/caregivers don't know much about the disease/disorder? Go to the school nurse first. He/she may know about the disease and be able to give you some basic information. Go to the NORD website or look up information online. The Mayo Clinic, Johns Hopkins School of Medicine, and Childrens Mercy Hospital in Kansas City are great resources.
  • Open communication with the school nurse and the parents/caregivers is paramount. It is very important for parents/caregivers to share how their child is doing. Some mornings may be difficult, and it may be important for the student's well being to notify the school/teacher. If the parents/caregivers feel that their information is ignored or looked at as excessive, the parents/caregivers may not share as openly and that could impact the student's health.
  • Even if you believe you already know a great deal about a certain disease/disorder; there may be things you didn't know. i.e. Cystic fibrosis (CF) does not just effect the patients lungs but other organs as well. Also, patients with CF need a special diet and can not eat certain foods.
  • Kids with rare diseases/disorders are still kids. They want to be treated like everyone else and do what the other kids do, even when it's not wise. Listen to the kids and understand that they may feel left out or like their being treated unfairly. Be willing to re-evaluate situations and see if there is some kind of compromise or a change that needs to be made so that these students can participate or feel less "different".

Today is Rare Disease Day, but every day for kids who have a rare disease/disorder can be a struggle; not just because of their disease/disorder but also because of people misunderstanding their conditions. Becoming informed is a great gift for those with rare diseases/disorders.

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