How much can von Willebrand disease affect daily activities?

Question

Hello doctor,

My 14-year-old daughter was just diagnosed with von Willebrand disease after heavy periods that landed her in the ER twice. We had no idea she had a bleeding disorder. The gynecologist suggested hormonal birth control to manage her periods, but I am uncomfortable with that at her age. She is missing school monthly and becoming anemic. The sports coach benched her as a precaution. What are our options besides hormones? Is this something she will outgrow? How restrictive will this be for her life? She is asking if she can still go to summer camp and if she will be able to have kids someday.

Thank you.

Answer 1

Hi,

Welcome to icliniq.com.

I am sorry to hear about your daughter's diagnosis.

Non-hormonal options for managing von Willebrand disease (VWD) include Desmopressin (DDAVP), von Willebrand factor concentrates, and antifibrinolytic agents like tranexamic acid. VWD is lifelong, but with proper management, she can lead a fulfilling life. Low-impact sports are generally safe, and she should be able to attend school and summer camp. Women with VWD can have successful pregnancies with proper care. Discuss these options with her healthcare team to find the best approach for her. If you have more questions or need further support, feel free to ask.

I hope this information helps you.

Revert in case of queries.

Regards.