Von Willebrand Disease
Program Summary: Hemophilia and Related Bleeding Disorders
What is the Hemophilia and Related Bleeding Disorders Clinical Management program?
If you use first.dba Specialty Pharmacy for your factor product, you may be enrolled into the Hemophilia and Related Bleeding Disorders Clinical Management (CM) program. The goal of this program is to help you and/or caregivers manage hemophilia or other types of bleeding disorders, and to promote health and wellness through education. This program is provided to you at no cost.
What does the program involve?
- You will get one-on-one consultations with a pharmacist or nurse who is trained in bleeding disorders. The pharmacist or nurse can:
- Answer any questions you may have about hemophilia or another type of bleeding disorder and its treatments
- Provide information to help you manage hemophilia or another type of bleeding disorder
- Teach you how to manage any side effects
- You will also receive education materials in the mail to help you to learn more about hemophilia and related bleeding disorders
A phone appointment will be scheduled when you receive a call to coordinate your medicine delivery. You may also call us at 1-855-855-8754 (TTY: 711) if you would like to schedule the phone appointment.You will also receive education materials in the mail to help you to learn more about hemophilia and related bleeding disorders.
How will this program benefit me?
In this program, you will:
- Have access to knowledgeable pharmacists or nurses
- Gain a better understanding of hemophilia or another type of bleeding disorder and the medicines used to treat it
- Have the knowledge and necessary tools to take an active part in the management of your health
- Receive information about other resources, such as support groups and financial assistance
If you have questions or would like more information, please call 1-855-855-8754 (TTY: 711), Monday through Friday, from 5 a.m. to 7 p.m. PST.
Choose a Topic
- What is von Willebrand Disease?
Who Gets von Willebrand Disease?
What is the von Willebrand Factor?
What are the Common Symptoms of von Willebrand Disease?
What Are the Different Types of von Willebrand Disease?
What are some general tips for me or my child with VWD?
How do you treat VWD?
Can I give VWF and factor VIII replacement therapy at home?
How do you store the medications?
Do I need to be concerned about getting infections from factor products?
What are Hemophilia Treatment Centers (HTC)?
Where can I find more information about VWD?
Where can I go to get an infusion log?
WHAT IS VON WILLEBRAND DISEASE?
Von Willebrand disease (VWD) is a bleeding disorder. In VWD, a blood protein called von Willebrand factor is either not working or there are low levels of it. VWD is the most common bleeding disorder. It takes longer for people with VWD to form a clot and stop bleeding.
WHAT IS VON WILLEBRAND FACTOR?
The von Willebrand factorVWD is a glue-like protein needed to stop bleeding. When there is a bleed, the VWF sticks to platelets in the bloodstream to create a clot. This blood clot prevents bleeding. Factor VIII is another blood protein needed to stop a bleed. The VWF also carries factor VIII (eight) in the blood.
WHO GETS VWD?
Both males and females may get VWD. VWD is an inherited disease. Parents may pass it down to their children.
WHAT ARE THE DIFFERENT TYPES OF VWD?
Listed below are the 3 different types of VWD
Table 1. Types of VWD
WHAT ARE THE COMMON SYMPTOMS OF VWD?
Common symptoms of VWD including the following:
- Easy bruising
- Often large in size (more than 2-3 inches)
- Can occur without known injury
- Many and long-lasting nosebleeds
- More than once or twice a month
- Does not stop within 10-15 minutes
- Heavy or prolonged menstrual bleeding
- Menstral pad or tampon needs to be changed more often than hourly
- Lasts longer than 6 to 8 days
- Long-lasting bleeding after surgery, dental work, childbirth or injury
- Lasts more than a few hours
- Blood in the urine or stool
- From bleeding in the kidneys, bladder, intestines, or stomach
WHAT ARE SOME GENERAL TIPS FOR ME OR MY CHILD WITH VWD?
- Physical activity and exercise may help raise. VWF levels and strengthen muscles. Avoid certain activities like football or boxing. Talk to your doctor before doing any sports.
- Avoid medications, vitamins, and herbs that prevent platelets from working, such as aspirin and ginko biloba.
- Avoid using Non-Steroidal Anti-Inflammatory Drugs (NSAIDs), such as ibuprofen (Advil®, Motrin®) and naproxen (Aleve®). They may increase the risk of bleeds.
- Be careful when using sharp objects such as knives or scissors. Avoid straight razors. Use safety razors or electric shavers instead.
- Prevent nosebleeds by keeping your nostrils moist. Use petroleum jelly (e.g., Vaseline®) or vitamin E oil in your nostrils.
- Get immunized against hepatitis A and hepatitis B.
- Maintain good dental hygiene.
- Talk to your doctor before all dental procedures.
- Talk to your doctor about keeping some Amicar® (aminocaproic acid) at home. This medication helps preserve a blood clot once it forms in the mouth.
- Tell the dentist that you or your child has VWD.
- Keep a log of bleeding events
- Include the name of the factor medication used, how much used, the lot number, and the expiration date.
- Talk to your other.dba pharmacist for a log to help you keep track.
HOW DO YOU TREAT VWD?
VWD is a lifelong condition with no cure. Recommended treatment is to prevent or stop a bleed. Listed below are the most commonly used treatments for VWD.
Table 2. Treatments Commonly Used for VWD.
Desmopressin (DDAVP®, Stimate®, Minirin®)
VWF and Factor VIII Replacement Therapy
CAN I GIVE VWF AND FACTOR VIII REPLACEMENT THERAPY AT HOME?
Some people give the products at home to themselves or to their children. You will need special instructions before using the medications at home. Contact your doctor for special instructions
HOW DO YOU STORE THE MEDICATIONS?
Some medications may need to be refrigerated or stored in a certain way. Please read the medication guide that came with your medication to find out where to store it. Or you can contact your other.dba pharmacist if you have any questions about where to keep your medications.
DO I NEED TO BE CONCERNED ABOUT GETTING INFECTIONS FROM FACTOR PRODUCTS?
The risk for viral infection has decreased because blood donors are checked. Donated blood products are tested and treated to destroy viruses. There is a smaller chance of getting an infection from recombinant factor products than plasma-derived products. Register for the Patient Notification System free of charge. This program tells people about recalls on any of the factor products.
Patient Notification System
Phone: 1.888.UPDATE.U (1.888.873.2838)
Web site: www.patientnotificationsystem.org
WHAT ARE HEMOPHILIA TREATMENT CENTERS (HTC)?
Hemophilia treatment centers (HTC) are resources for families and people with bleeding disorders. Medical experts at HTCs provide treatment, education and support. They teach people how to do home treatments and can also provide information to your provider. People who get care at HTCs are:
- Less likely to have bleeding complications and hospitalizations.
- More likely to have a better quality of life.
How often a person visits a HTC will vary. Some people are followed closely by their health care providers and only go to a HTC once or twice a year for check-ups, while others may go more often. For a listing of HTCs near you, please visit the Centers for Disease Control and Prevention Website (https://www2a.cdc.gov/ncbddd/htcweb/Dir_Report/Dir_Search.asp).
WHERE CAN I FIND OUT MORE INFORMATION ABOUT VWD?
other.dba can give you more information about VWD. Some of the topics include:
For more information on VWD, please contact the following resources:
National Heart Lung and Blood Institute
Web site: http://www.nhlbi.nih.gov/health/public/blood/index.htm[CMN2]
Please click here to download an infusion log.
- National Heart Lung and Blood Institute Web site. http://www.nhlbi.nih.gov/health/dci/Diseases/vWD/vWD_WhatIs.html. Accessed December 22, 2009.
- National Hemophilia Foundation Web site. Von Willebrand disease. http://www.hemophilia.org/NHFWeb/MainPgs/ Accessed December 22, 2009.
- Paper R, Kelley LA. A Guide to Living with von Willebrand Disease. Georgetown, MA: LA Kelley Communications, Inc.; 2003.
- Patient Notification System Web site. http://www.patientnotificationsystem.org/. Accessed September 1, 2010.
The information in this educational handout doesn’t substitute the medical advice, diagnosis, or treatment provided by your doctor. Always seek the help of your doctor or a qualified health provider for any questions about your medical condition.