Helping Children Manage their Bleeding Disorder

I am a kid I am an adult

The earlier you can support your child to be actively involved in their healthcare, the better they will be prepared down the road for transitioning to managing their own care. There are age-appropriate steps kids can take, with your guidance and support, such as: 

Explaining their bleeding disorder to others (friends, teachers, coaches) 
Helping with their treatment and even self-treat, as well as log treatments 
Coming up with questions or updates for their doctor visits 
Learning how to order treatment products and supplies

If you want more information about how to support your child with their treatment, please go to Staying on Treatment. 

If you want more tips and tools for supporting your child’s development of independence, please go to Got Transition. 

Taking on managing your health isn’t so much a “big step” as lots of little steps. You may wonder how to take the first step or who can help. There are many resources and people ready to help you. You can reach out to your Hemophilia Treatment Center (HTC) and health care providers. Managing your own health care allows you to become more independent, go away to school, get a job, travel, and much more.

This section covers:

Taking Steps to Manage Your Health Care

Making Your Own Health Care Choices

Taking Steps to Manage Your Health Care

Even though you may not be an adult yet, you can still take steps to manage your health care. Below are some ideas to help you get started.

Explain your blood or bleeding disorder to others, like friends, teachers, or coaches.
Know what medication you take and why.
Help with your treatment and even self-treat.
Log your treatments or when you take your bleeding disorder medicine.
Come up with questions or updates for your visits with health care providers.
Learn how to order medicines and supplies.

Learning how to talk to your health care provider is one important step. Your parent or caregiver may still be in the room with you, but you can begin to ask questions of your own. You can even try being in the room alone for part of a visit. It can be hard to talk to health care providers, even for adults. You might feel uncomfortable talking about your health. This is normal. By practicing now, you will feel more at ease when you are an adult. Being able to communicate your needs is called self-advocacy.

There are resources to help you learn to self-advocate. Check out some of the resources below:

Got Transition: Questions to Ask Your Doctor

Better You Know: Doctor Visit Preparation Guide

Better You Know: Healthcare Diary

As you manage more of your health care on your own, you will also have to learn more about:

Understanding your health insurance.
Understanding about prescriptions.
Learning about your personal and family health history.
Getting and wearing your medical alert jewelry.
Being prepared in case of emergency.

When you become an adult, it will be time to move from a health care provider for children to one for adults. Even at your Hemophilia Treatment Center (HTC) you will be with providers that care for adults once you get old enough.

Making Your Own Health Care Choices

As you take charge of your health, you may begin to make decisions on your own. Some of these decisions are:

Where you get your health care
Choosing your health care providers and specialists
Where you will get your medications and supplies
What medicines or treatments you use

Even as you start to make your own decisions you can still talk to your parents or caregivers. They can answer questions or discuss decisions. Your Hemophilia Treatment Center (HTC) or local bleeding disorders organization can also help. For example, if you haven’t been self-infusing, your HTC team can help you decide if this is a good option.

If you want more information on how to make decision, please go to Medical Decision Making.

If you want more information about the basics of treatment, please go to Treatment Basics.