Patient Resources

BCDI has compiled a list of printable educational handouts for patients and their families.

The following documents are available for download and print:

• FREE Specialized Care for Children – University of Illinois at Chicago – Division of Specialized Care for Children
• Application to the State Hemophilia Program – Illinois Department of Healthcare and Family Services
• A glossary of terms relating to blood and clotting disorders
• Nosebleed Fact Sheet
• Management of Nosebleeds Brochure
• Playing it Safe – Courtesy of the National Hemophilia Foundation
• Travel Information: In-Flight Fitness and Passport Safety
• Vitamin K Food List
• Amicar Fact Sheet
• Bleeding Disorder Dental Care
• DDAVP Stimate (Spanish)
• Easy Bruising Fact Sheet
• Emergency Care Information
• Heavy Menstrual Bleeding Fact Sheet
• Infusion Training Booklet
• Inhibitors Fact Sheet
• Mediport Fact Sheet
• Mediport Training Booklet
• Mediport Troubleshooting Fact Sheet
• New Hemophilia Diagnosis Packet
• New Hypofibrinogenemia – Dysfibrinogenemia Diagnosis Packet
• New Platelet Function Disorder Diagnosis Packet
• New von Willebrand Disease Diagnosis Packet
• Nosebleeds Fact Sheet
• PK Study Fact Sheet
• Stimate Fact Sheet with Fluid Restriction Guidelines
• Tranexamic Acid (Lysteda) Fact Sheet
• Vaccines for Bleeding Disorder Patients Fact Sheet

Patient Resources

Below are additional resources for our patients and their family to learn more about their diagnosis and connect with others in their community for fellowship, advocacy and support.

Advocacy Groups and Chapters
Bleeding Disorders Alliance Illinois (BDAI)

National Bleeding Disorders Foundation (NBDF)

Platelet Disorder Support Association (PDSA)

American Thrombosis and Hemostasis Network (ATHN)

National Diagnosis Resources
Centers for Disease Control and Prevention (CDC), Hematologic Diseases Branch
National Heart, Lung, and Blood Institute

Advocating for Yourself
BCDI considers the patient and their family to be an integral part of the care team. It is important that you feel comfortable talking freely with the entire team including your hematologist, nurse practitioner, nurse, social worker, dentist and physical therapist. We want to know all of your symptoms, changes in activities or things that may affect your health including lifestyle changes.

Some key tasks you can do to advocate for you or your loved one may include:

• Come to your appointments prepared with information about recent symptoms
• Ask questions if there’s something you don’t understand. Your care team is here to help you
• Adhere to the plan of care you are provided
• Understand your insurance and if you have obstacles reach out to our social worker Marsha for help

Mentoring Program
BCDI has a mentoring program for newly-diagnosed patients and their families. The purpose of the mentoring program is to provide reassurance to families who are dealing with their own unique experiences with a bleeding or clotting disorder. For more information, contact Marsha at (309) 692-5337.