PI Problems: Tips for Going Back to School with a Rare Disease

Scratchy jeans. No. 2 pencils. Trapper Binders. Squeaky shoes. Floor polish. Helpful bus drivers. Smiling teachers. Ah, the scents, sights and sounds of the first day of school. I loved them. I’m sure they existed throughout the other 179 school days, but for some reason, they meant more that day.

However, when a child is also battling cancer or a rare disease like Common Variable Immune Deficiency (CVID), a PI disease, the first day of school can bring about different feelings, such as anxiety and fear about balancing healthcare needs and school assignments.
The keys for success are shared in an online article from Horizon Pediatrics & Primary Care.

Let’s face it: attending school is part of life when you’re a kid, but even the most stubborn kid would rather be healthy and in class, than in a hospital. When kids have chronic conditions that make them miss school, life can become difficult for teachers, students, and parents.

So, first things first.

When your child has a chronic condition that may interfere with traditional classroom instructions and homework expectations, the first step is to reach out to the teachers, counselors and school specialists. When both the family and school understand the situation, it’s easier to make a plan for success. Sometimes it may be necessary to be flexible on due dates for projects and tests. The more teachers know about upcoming medical treatments and appointments, the more flexible they’ll be able to be about deadlines.

Technology can also help students stay up to date with their materials and teachers.

In-class cameras and distance learning have come a long way to helping students remain current and connected. Skype and FaceTime are easy ways to get lessons via a computer. Technology can also help rearrange the traditional timeline for teaching. Classes can be recorded and watched on demand by students who may be struggling with lengthy treatments or recovery.

Being connected to your child’s school offers many benefits—academically, mentally, and socially. It’s also his or her legal right to receive educational support. The best way to help your child succeed in school is to take the time to get everyone involved right from the start and develop a plan for success.


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