You may be surprised to hear that it is not haemophilia. It is von Willebrand disease , a related disorder that few people have heard of, unless they have it or know someone who does. Perhaps because the disease is usually less severe than haemophilia, it has not generated the kind of publicity, educational efforts and support that other chronic illnesses have. In fact, it is often so mild, it is not diagnosed at all.
Some people live with the disease for many years before getting an accurate diagnosis.
For more severely affected patients, this lack of knowledge has caused real suffering. It was virtually impossible to get proper treatment. Fortunately, substantial progress has been made in recent years. The von Willebrand gene has been identified and research is underway to develop gene therapy. As research continues, however, the challenge continues to educate healthcare professionals and the public about this disorder.