Heading Back to School Requires Planning for Girls With Hemophilia

Originally published on Hemophilia News Today by BioNews, Inc.

Dust off those backpacks, girls, it’s time for the school year to begin!

When your daughter has hemophilia or another type of bleeding disorder, sending her to school can be overwhelming. But we’ve come a long way since my school days.

Children today are fortunate to have access to treatment without worries of HIV/AIDS or hepatitis, as in years past. The stigma around these issues in the 1980s no longer exists. Communication about hemophilia with educators can be open and positive, and a learning experience for all.

‘Living in the ’80s’

In the ’80s, attending school while having a bleeding disorder was a “figure it out and keep it to yourself” affair. There was no disclosure of my bleeding disorders to my teachers or the school nurse. Not even my closest friends knew, and I was OK with that. I had no desire to be different.

But there were signs of a problem. I was the girl hobbling around with crutches in my middle and high school halls. My knee would dislocate and swell like a blowfish, courtesy of Ehlers-Danlos syndrome and my bleeding disorders, hemophilia B and von Willebrand disease.

I had frequent absences from school, which affected me academically. I fell behind in middle school math and switched to a less advanced class. My school did not provide resources. Looking back, I would have benefited from a 504 education plan, which ensures that a child with a bleeding disorder will receive accommodations to facilitate their academic success.

‘Aunt Flo’ requires accommodations

Today, girls diagnosed with bleeding disorders are frequently given concessions at school to accommodate their monthly periods. Back then, a hall pass courtesy of — OK, borrowed from — the band director came in handy for extra bathroom trips when “Aunt Flo” came to visit. I kept a sweatshirt in my locker and often couldn’t make it through my classes without bleeding through my protection.

A newly published fact sheet for educators on von Willebrand disease, from the organization Hemophilia of Georgia, states that, “Menses may last up to two weeks. Multiple medications may be used to stop the bleeding. Some have side effects that cause headache, nausea, and loss of sodium in the bloodstream. Allow students to have a sodium-rich beverage. Please allow for frequent bathroom breaks for students with this disorder.”

This fact sheet would have been beneficial to me back in the day.

Physical education

Today, children with bleeding disorders are encouraged to participate in gym classes and sports designated as safe by their hematologist. Back then, my orthopedic surgeon provided a note to excuse me from gym class for all of high school. No gym class was fine by me! I felt like I had a get-out-of-jail-free card. I was not too fond of those ridiculous one-piece outfits and the communal shower situation.

Swimming was my exercise, but I had to follow seemingly unfair rules due to my knee problems. I was allowed on my high school swim team but couldn’t practice with the varsity team because the breaststroke kick was hard on my knees. I wasn’t allowed on intramural sports teams, either, including cheering or dance. It was crushing at the time, but looking back, it makes total sense.

Have a plan

I highly recommend you send your daughter back to school with a plan. If you have a daughter with hemophilia and heavy menstrual bleeding, you may be well served to look at the guidelines for girls with von Willebrand disease and ask for the same concessions.

Following are five online resources for help:

1. Kudos to Hemophilia of Georgia for addressing the needs of girls in their recently released fact sheets, which are available in English and Spanish. The guides provide information on several bleeding disorders and target schools and daycare centers.

2. The Hemophilia Federation of America provides a back-to-school toolkit on its website.

3. CVS Specialty provides a Hemophilia School Preparedness Kit and Suggestions for an Individualized Health Plan.

4. Reach out to your local hemophilia treatment center. Many will provide services and education directly to your school nurses and staff.

5. The Virginia Hemophilia Foundation provides a list of resources on its website.

Dream big and study hard, girls. Here’s to a happy and healthy school year — let the learning begin!