Von Willebrand Disease – Suggestions for Improving the Quality of Life

Von Willebrand Disease is scarcely known, but quite frequent, affecting 8 out of 1000 people worldwide. Here we will discuss what this disease entails and how to live with it.

What Is Von Willebrand Disease

Named after the Finnish doctor that discovered it, is a congenital genetic blood-clotting disorder. It is caused by a defect in the function, structure or quantity of the Von Willebrand factor, a protein that helps blood to clot. The defective gene is not on the sex chromosome, but specifically on chromosome 12. For this reason, the gender of a newborn has no impact on the probability that the disease will be transmitted.

The disease, thus, affects men and women alike and is classified into three main types of based on:

  • The level of deficiency of the Von Willebrand factor, which can be
    • partial (type 1)
    • or total (type 3)
  • The type of dysfunction (variant of type 2)

Symptoms

The signs and symptoms are similar to those of hemophilia, which it is often mistaken for, and the severity of the symptoms varies from case to case:

  • mucous membrane hemorrhages (excessive nose bleeds, heavy bleeding during menstruation)
  • bleeding gums
  • gastrointestinal bleeding
  • traces of blood in urine
  • easy bruising, hematoma, prolonged bleeding following skin laceration

How is Von Willebrand Disease Treated?

The main treatment is the administration of “desmopressin”, a substance capable of stimulating the production of proteins that aid coagulation. Desmopressin can be taken intravenously, orally or even through a nasal spray. Continuous treatment is necessary in severe cases, while mild cases require treatment on exceptional occasions, such as before undergoing surgery.

Alternative treatments, such as antifibrinolytics, can be found in local pharmacies and include aminocaproic acid and tranexamic acid.

Living With Von Willebrand Disease

Treatment for Von Willebrand Disease is available through Domedica’s patient support programs. While pharmacological treatment is easy to administer and the disease itself is not necessarily disabling, it does influence many aspects of daily life. The following is some practical advice that Domedica offers:

  • Avoid medicine that affects coagulation, such as aspirin, ibuprofen and other anti-inflammatory medication. Always consult a doctor before taking any type of medication.
  • Put medical specialists in contact with your general practitioner. For example, your dentist should consult your general practitioner before performing dental procedures so that a specific drug can be prescribed to avoid excessive bleeding.
  • People in your daily life, such as your personal trainer or sport instructor, should know you have the disease so they are properly informed in case of injury.
  • If you are suffering from type 3, wear a medical ID bracelet or necklace that indicates the medical condition.
  • Live a healthy lifestyle. In particular, incorporate stretching into your routine to prevent muscle and joint damage.
  • Women with Von Willebrand disease have an increased risk of bleeding during childbirth and postpartum hemorrhaging. A hematologist should be in contact with the obstetrician in charge of labor.

Domedica thus provides holistic care, not only considering the proper pharmacological treatment, but the practical and emotional needs that make up the person as a whole.

© Domedica s.r.l.

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