April 17 is World Hemophilia Day. Most of us have heard of hemophilia and know that it’s a bleeding disorder, but we just have to make sure a student with hemophilia doesn’t get cut, right? WRONG! There is so much more about hemophilia and those who struggle with it than most of us know.
There are two types of hemophilia, A and B. The main symptom is bleeding. The cause is a lack of one or more clotting features making it so that the person’s blood does not clot as it should and there is excessive bleeding. Hemophilia is an inherited disorder and is not contagious.
Hemophilia can be mild, moderate, or severe, so (as with many other diseases and disorders) it is important to know how hemophilia affects the particular student as your school. No matter what kind or how severe a student’s hemophilia is, it’s a good idea to request or make a 504 plan.
Some accommodations that may be a good idea to add to a 504 plan or IEP are as follows:
- extended time on assignments (students with hemophilia may need to miss school, and extended time can help him/her catch up with what has been missed)
- extended passing time between classes (to help insure the student doesn’t become jostled causing an internal bleed because of the amount of students in the hallway)
- alternative recess (when a student is recovering from a bleed, indoor recess may be necessary)
- early release to and from lunch
- adaptive or alternative PE (as needed for reasons stated above)
One mother shared with me what she hopes schools would understand about hemophilia.
- “Just because you can't see something with your eyes does not mean there is not a problem.
- Don't be afraid to treat my child just like you would every other student. He's not a china doll!
- Always call me when you're in doubt.
- Always take my child seriously when he says he is having a health issue. Because you cannot always see the internal health troubles he is having, and he is trained to manage his own disorder, please trust that he is being honest with you about his health.”
As educators, it is important to remember that kids want to be kids. A student with hemophilia doesn’t want to be left out because he/she “might” get hurt. Sometimes it is necessary to recommend alternative activities, but most of the time it is only on an as needed basis.
For more information about hemophilia go to http://www.nhlbi.nih.gov/health/health-topics/topics/hemophilia/
