Hemophilia Center

Bloodline

Bloodline is a newsletter published by the Hemophilia Center to provide families with information about the ever-changing field of hemophilia and other bleeding disorders.

Do the 5: A Guide for Living with Hemophilia

This comprehensive guide includes fact sheets covering all the essentials that you need to know about living with hemophilia. The National Hemophilia Foundation’s five strategies for living a longer and healthier life:

• Get an annual comprehensive checkup at a hemophilia treatment center.
• Get vaccinated. Hepatitis A and B are preventable.
• Treat bleeds early and adequately.
• Exercise and maintain a healthy weight to protect your joints.
• Get tested regularly for blood-borne infections.

Parent Empowerment Newsletter

This newsletter is designed for families affected by bleeding disorders and is produced by a parent of a child with hemophilia.

Passport for Life: A Support Program for Everyday Living with Hemophilia

This comprehensive support program from Baxter International Inc. and HealthMedia encourages appropriate treatment adherence and patient support.

The Family Support Network at Cincinnati Children’s includes specialists from Child Life, Financial Services, Pastoral Care and Social Work. These network resources can provide:

• Emotional, psychosocial and spiritual support
• Assistance with schooling concerns
• Community outreach and education
• Information about additional resources (financial, insurance, community)
• First Steps, a support group for patients and families
• Assistance with lodging, ground transportation and other concerns 

The Cancer and Blood Diseases Institute at Cincinnati Children’s hosts a week-long summer camp every year. “Hem / Onc Kids Camp” takes place at Joy Outdoor Education Center in Clarksville, OH. The staff works closely with the Cincinnati Children’s medical team to create a safe, supportive environment for children, no matter what their abilities. The camp is an opportunity for kids ages 7-16 to develop new skills, form lasting friendships and build their self-esteem, all while having a great time. Patients are encouraged to bring a sibling.

At Cincinnati Children’s, we understand that it is helpful and reassuring to hear stories from families in similar situations. Read stories from other families.

Other organizations provide extensive support and education for patients and families dealing with hemophilia, including:

Staying Connected

• CarePages, a free service that allows families to easily create web pages during a health challenge to keep friends and family informed.

Greater Cincinnati Support and Advocacy

• Greater Cincinnati / Northern Kentucky Chapter of the National Hemophilia Foundation. Call 513-961-4366 or email hemophilia@fuse.net for more information.
• Tri-State Bleeding Disorder Foundation

International Education, Advocacy and Support

• Centers for Disease Control and Prevention
• HANDI (Hemophilia and AIDS / HIV Network for the Dissemination of Information). Call 800-42-HANDI for more information.
• The Hemophilia Federation of America
• Hemophilia Galaxy
• Hemophilia of Georgia Inc.
• National Hemophilia Foundation
• The World Federation of Hemophilia