Supporting Students with Bone Marrow Failure Diseases

[Marrowforums]

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) has put together some very useful information about the issues that pediatric AA, MDS, and PNH patients face at school. The information is for both parents and schools.

Supporting Students with Bone Marrow Failure Diseases: A Guide for Parents & School Personnel (PDF, 780K) is an excellent resource and can be downloaded and shared with teachers and administrators at your child's school.

The AA&MDSIF also provides a list of Back-to-School Tips, many of them about ongoing communication between you, school staff, your child's doctor, and your child, as well as your child's friends and classmates.

Even with their experience, school nurses are unlikely to know much about bone marrow failure diseases, and it's unlikely that a teacher would be familiar with the unique problems of young AA, MDS, or PNH patients. Information that you share could make a big difference and make going to school much smoother and safer for your child. The more everyone knows, the more they can be part of your team.

[Neil Cuadra]

As a school volunteer for many years, I've had a lot of chances to observe kids in their school environment. Through their pre-teen and early teen years, children can be very self-focused and image-conscious. It's part of growing up. Unfortunately, illness can interfere with the normal process of social development.

When a student knows that a classmate is sick, his or her first impulse is likely to be self-centered. How does it affect me? What made my classmate sick? Can I catch it? If a classmate has a broken arm in a cast, they see it and can understand. But bone marrow failure isn't visible and symptoms such as low energy, bruising, and school absences can make it seem very mysterious and frightening to other students.

In ignorance they may avoid or ostracize the sick student, just the opposite of what is needed. The solution is to provide simple and straightforward explanations of the facts, in terms they can understand, and to address the fears they may be harboring. These explanations could come from adults or from the student himself/herself. Classmates should have the chance to ask any questions they have because adults can often have trouble knowing what kids are worried or curious about.

I think it's especially important for a student's closest friends to have their questions answered and to have an understanding of what bone marrow failure means in a practical way for their sick friend. Having good friends at school, including having someone to walk to classes with, each lunch with, hang out with after school, etc., can make a big difference in helping a sick student feel less lonely, more normal, and better able to fit in. It can help them cope with their own fears and make them less likely to be picked on.

Teachers clearly need to understand how a bone marrow failure disease affects their student (limited energy, school absences, a special diet, limits on sports and playground activity, and so on), but don't forget to include friends and classmates when you talk to people at school who can make school easier for your child.