Helpful resources
Living with von Willebrand’s disease (VWD) can be a challenge. The key to living a normal life with VWD is receiving an accurate diagnosis and proper treatment as soon as possible. With VWDtest.com, bleeding disorder experts Prof. Corrales-Medina, Prof. Berntorp and their colleagues would like to support you on your journey. Our aim is to help you find out if you “bleed too much” and guide you through the first steps of diagnosis and management of VWD, one of most common and yet underdiagnosed bleeding disorders.
Global patient support and advice
Bleeding disorders affect hundreds of thousands of people all over the world. They all face challenges and look for ways to improve their lives with conditions such as von Willebrand disease. To address their needs and support them on their journey , scientists, doctors and patient groups work hard every day. To learn more about their activities and how they can help you improve your life, we recommend that you have a look at some of the following websites:
European Association for Haemophilia and Allied Disorders
Foundation for Women & Girls with Blood Disorders
Hemostasis and Thrombosis Research Society
International Society on Thrombosis and Haemostasis
National Hemophilia Foundation
There are many more associations, patient groups and activities in countries and regions all around the globe. If you are looking for contacts to local bleeding disorder specialists or a local patient group, or to learn more about activities for people with bleeding disorders in your area, please select your country/region under the main menu and visit the local Helpful Resources page.
Bleeding Assessment Tool
A diagnosis of a rare bleeding disorder like VWD can be a long process and some people wait several years for a diagnosis. One of the keys to an accurate and timely diagnosis is the assessment of the bleeding symptoms.1 For a comprehensive assessment of the most common bleeding symptoms, we recommend that you take our bleeding test.
Period bleeding score card
The most frequent bleeding symptom in women with VWD is heavy menstrual bleeding (HMB).1 If you are uncertain about your period, doctors have developed several tools to assess your monthly bleeding, some of which you can also download on your phone. On VWDtest.com, you can download an easy-to-use menstrual chart that will help you find out if you experience HMB. If the results suggest that your bleeding is heavier than normal, please bring these results and discuss them with your doctor.
Your journey with VWD
Living with a bleeding disorder such as von Willebrand disease (VWD) is always a journey. The journey may start very early when you or your child are experiencing the first symptoms. However, the diagnosis may also take time. Wherever you are on your journey with VWD, it is often useful to know what the next step should be.
We have developed some tips and tools to help you – Click on each box to find out more.
References
- Corrales-Medina FF et al. Blood Rev 2023; 58:101018.
2 Seeking help from your doctor
3 Seeking a specialist
4Learning to live with VWD