Our publications address the many challenges you face as you reach new milestones in life with hemophilia. For this week’s HemaBlog, we suggest you check out this website to learn more about handling life’s many phases and changes!
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Every life has its twists and turns, and that’s even more true for young people with bleeding disorders and their caretakers. BleedingDisorders.com is right there with you through every mile of the journey, with info and resources designed to help you and your family navigate change—whether that means your child’s first day of school or their last day living at home.
As school is getting underway, get the team together
Starting school is a big step—for you and your child! To make it as safe as possible, it’s a good idea to go over some important topics with key members of your school team, including your child’s teacher, the school nurse, the guidance counselor, the gym teacher, and someone from administration.1 You play an important role in educating them about your child’s bleeding disorder and what they should expect with your child under their supervision. And of course, this meeting can be virtual or in-person, depending on your school’s situation.
Wondering what other topics you should cover with your ace team of educators? Bleedingdisorders.com has put together a helpful list.
Growing up and taking control
Young adulthood is another important transitional period for people living with a bleeding disorder. For some, it might be the first time in their life they are responsible for managing their treatment and their symptoms on their own. And whether they are moving into a college dorm or just moving out, you and your child should make sure you’re both prepared for the transition.
Here are a couple key tips for your family that could help make the move go smoother:
Prep for an Emergency
With hemophilia, a bleeding emergency can come at any time. Preparing an Emergency Care Letter and an emergency bag with everything they’ll need can save time and stress.2
Ace Your Storage Quiz
Make sure they know exactly how to store and handle their treatment. Products that have been improperly stored or have expired may not be as effective in preventing or treating bleeding episodes.3
See the full list of helpful tips for young adults at BleedingDisorders.com.
No matter what life stage you or your child is at, it’s important to have a good relationship with your local Hemophilia Treatment Center, where you can get expert advice about managing a bleeding disorder. Your healthcare provider team can also help with any big life changes your family may face. And of course, connect with the Bleeding Disorders community on Facebook, Instagram, YouTube, and Twitter, and sign up to get the latest news and updates.
- Phyllis McIntosh; HemAware. Back to school. 2006. Accessed September 14, 2020. https://www.hemophiliafed.org/uploads/Back-to-School_Hemaware.pdf
- Emergency preparedness. Steps for Living website. Accessed September 14, 2020. https://stepsforliving.hemophilia.org/step-up/treatment/emergency-preparedness
- Frase M. Safely storing factor at home. HemAware website. June 21, 2010. Accessed September 14, 2020. https://hemaware.org/bleeding-disorders-z/safely-storing-factor-home
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