Living with Von Willebrand Disease

Von Willebrand Disease (VWD) is a genetic bleeding disorder that affects the blood's ability to clot properly. It is caused by a deficiency or dysfunction of von Willebrand factor (VWF), a protein that plays a crucial role in clotting. Living with VWD can present challenges, but with proper management and lifestyle adjustments, individuals with VWD can lead fulfilling lives.

Understanding Von Willebrand Disease

VWD is classified into three types: Type 1, Type 2, and Type 3. Type 1 is the mildest form, characterized by a partial deficiency of VWF. Type 2 is further divided into subtypes, each with specific abnormalities in VWF function. Type 3 is the most severe form, involving a complete absence of VWF.

Managing VWD

Proper management of VWD is essential to minimize the risk of bleeding episodes and complications. Here are some key strategies:

1. Work with a Hemophilia Treatment Center (HTC)

HTCs specialize in bleeding disorders and can provide comprehensive care. They have experienced healthcare professionals who can guide you in managing VWD, including diagnosis, treatment, and ongoing support.

2. Develop a Treatment Plan

Work closely with your healthcare team to develop an individualized treatment plan. This may include:

• Desmopressin (DDAVP): This medication stimulates the release of VWF and can be used to treat or prevent bleeding in certain types of VWD.


• Von Willebrand factor replacement therapy: Infusions of VWF concentrate can be administered to control bleeding episodes or before surgeries or dental procedures.


• Antifibrinolytic medications: These drugs help prevent the breakdown of blood clots and can be used in combination with other treatments.

3. Be Prepared for Emergencies

Carry a medical ID card or wear a medical alert bracelet to inform healthcare providers about your condition in case of an emergency. It is also important to have an emergency plan in place and educate your close contacts about what to do in case of a severe bleeding episode.

4. Practice Good Dental Hygiene

People with VWD are more prone to bleeding during dental procedures. Inform your dentist about your condition and work with them to develop a plan to minimize bleeding risks. Regular dental check-ups and maintaining good oral hygiene are crucial.

5. Exercise and Physical Activities

Engaging in regular physical activities is important for overall health, but it is essential to take precautions to prevent injuries. Avoid contact sports or activities with a high risk of bleeding. If participating in sports, consider wearing protective gear and inform coaches or trainers about your condition.

6. Manage Menstruation

Women with VWD may experience heavy or prolonged menstrual bleeding. Discuss options with your healthcare provider, such as hormonal contraceptives or other treatments, to help manage menstruation and reduce bleeding.

7. Maintain a Healthy Lifestyle

Eating a balanced diet, maintaining a healthy weight, and avoiding smoking and excessive alcohol consumption can contribute to overall well-being and help manage VWD.

8. Emotional Support

Living with a chronic condition like VWD can be emotionally challenging. Seek support from family, friends, or support groups who understand your experiences. Mental health is an important aspect of overall well-being.

Conclusion

Living with Von Willebrand Disease requires proactive management and lifestyle adjustments. By working closely with healthcare professionals, following a treatment plan, and taking necessary precautions, individuals with VWD can lead fulfilling lives. Remember, knowledge is power, so educate yourself about VWD and stay informed about the latest advancements in treatment and care.