Sooner or later, a child with a bleeding disorder is going to grow up and live on their own, start a job, go away to school, and travel. Taking on more control and ownership over their lives is natural. But dealing with all the steps involved in managing a bleeding disorder, from ordering treatment and supplies to handling insurance issues, is a big responsibility and it may seem easier to let the adults who have always managed the child’s health care continue to do so. But it’s vital that young adults learn how to take charge of their own health and health care.1
“If your kids are educated on their blood disorder, then you’ve done your job. Now let them navigate life with what they know and be there to guide them when they need you.“ — Becky, parent
One of the first major decisions young adults make is to move away from home—typically to a college residence hall or apartment. As someone living with a bleeding disorder, you want to ensure that you know where the closest Hemophilia Treatment Center (HTC) is located as well as an emergency room (ER) or campus health clinic in your new location.
When you live with a bleeding disorder, you know that the need to go to the hospital can happen at any moment. Preparing an Emergency Care Letter and an emergency bag with everything you’ll need can save you time and stress.2
Treating bleeds quickly and adequately is only part of healthy living with a bleeding disorder. Many people treat their condition with routine prophylactic therapy. Regular prophylaxis therapy has been shown to decrease the occurrence of spontaneous bleeds.3 If you have trouble sticking to your prophylactic therapy routine, talk to your HTC or healthcare provider (HCP) team. They may be able to customize your routine to accommodate your lifestyle and help you stay protected.
“Having a bleeding disorder adds a whole new layer to becoming an adult. It’s important to stay adherent to treatment and involved in the community at this crucial time.“ — Amalia, Takeda community educator
Storing your bleeding disorder treatment properly is important. Products that have been improperly stored or have expired may not be as effective in preventing or treating bleeding episodes. This could result in longer treatment time since the bleed may not resolve as quickly as normal.4
It’s also important to dispose of any medical waste properly. A single-use sharps container is the best place to store needles, which can be purchased at a pharmacy or ordered through the mail. You can also place sharps in a puncture resistant plastic or metal container with a secure cap. Whatever container you use, it should be disposed of at a medical pick-up service or through a local drop off site.5
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Hemophilia Treatment Centers (HTCs) provide a range of education and support services.
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