Learning that you or your child has a bleeding disorder can be sudden and dramatic news. The lives of everyone in your family are affected. While other sections of Steps for Living provide information about the various bleeding disorders and their treatment, this section examines their emotional and psychological impact on family members and offers practical advice on coping with the changes.
Just as being prepared for a bleed is important, so is understanding the adjustments your family undergoes after the diagnosis and throughout their lives. Together each of you will be able to lead strong, healthy, happy, and productive lives.
In this section of Steps for Living, you will find information and guidance on:
The emotional impact of the diagnosis of a bleeding disorder
How to see your child as a "child" and not as a "diagnosis" or "disorder"
Ways to help manage the stress you may be feeling
Ways to develop a strong support network
Finding balance in your life
Caring for other children in the family who do not have a bleeding disorder
Getting prepared for an emergency
Finding local camps specializing in children with bleeding disorders and the benefits of these camps
Setting goals and limits
Find Your Silver Lining
Managing a bleeding disorder impacts you and the lives of those you love. It may seem overwhelming at times but managing a bleeding disorder can also bring opportunities for building confidence and strengthening relationships.
In this video, you’ll hear the personal experiences of those who have not only met the challenges of managing a bleeding disorder but have reaped the benefits of a positive outlook.
The information contained in this Web site is provided for your general information only. It is not intended as a substitute for visiting with your physician, nurse, or social worker. The National Hemophilia Foundation (NHF) does not give medical advice or engage in the practice of medicine. NHF under no circumstances recommends particular treatments for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.
This Web site is supported by the Centers for Disease Control and Prevention (CDC) Cooperative Agreement 5U27DD000534-02: National Hemophilia Foundation’s Proposal to Prevent Complications of Bleeding Disorders.
Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the CDC.