How To Live With Von Willebrands Disease

Preface
This research is directed to women affected by bleeding disorders, the friends and family of women with von Willebrand’s, and for parents who have a child diagnosed with the condition. The purpose of this research is to help the persons, especially women this bleeding condition and to enable to take control of their life and their situation, and to live life to the full. If exists thenecessary orientation of the impact of being diagnose with von Willebrand’s the patients will feel a little more comfortable and know they can expect from the condition and possible next steps.

This research pretends to offer more information about this condition because there is evidence that women experiencing symptoms of bleeding disorders, such as heavy periods, have had difficulty ingetting diagnosed and in receiving full information and advice on managing their condition.

I would like to thanks my doctor Augusto Medina of the Puerto Rico Hematology Oncology Group for providing me the a very complete information and to answer my questions and clarify my doubts and a for helped me to get real information about the topic.

Synopsis
There has been growing recognitionrecently of how bleeding disorders affect women. In the past the focus tended to be primarily on the treatment needs of boys and men with hemophilia, particularly at a time when treatment was not as effective or safe as it is now. Many of the problems encountered by women with inherited bleeding disorders closely parallel those of men similarly affected. However, there are many problems unique towomen that need to be addressed. These include problems with menstruation and fertility, as well as a different range of personal, social and emotional needs.

The thing that this research aims is to increase awareness among the general public and health professionals of the needs of women affected by bleeding disorders. I'm especially keen to reach health care professionals interested in women’shealth (for example midwives, health visitors, and family planning and gynecology specialists) who may be the first point of contact for women with bleeding disorders. This study want to raise consciousness of the need for women to get good information, diagnosis, treatment and support at the right time in order to help them manage their condition well.

Health care professionals in many casesare not fully aware of the condition or its implications. Access to treatment is patchy and information about treatments is not routinely available. Many women feel unable to lead a full life. Many simply suffer in silence. It can be very hard to talk about the condition, or to ask for help. I hope that this investigation can help those persons with this disorder to share some or all of it with yourfamily, friends, and partner or work colleagues, to fill in any gaps in their knowledge and to help them to understand your situation

Introduction

What is von Willebrand’s?
Von Willebrand’s is a blood clotting condition, which is usually inherited. It was first described about 70 years ago and is named after the person who first reported it. Erik A von Willebrand was a Finnish hematologistwho lived in the early part of the last century. He studied at the University of Helsinki and graduated in medicine in 1896. He then moved to the Aland Islands, where he became registrar physician at the Mariehamn Spa. There he studied the local community, concentrating on a familial bleeding disorder called “Alandic hemorrhagic disease”. This is what we now know as ‘von Willebrand’s’. Themedical term for the condition is “von Willebrand’s disease”. However, as the word ‘disease’ can carry some stigma with it for some people, we call the condition “von Willebrand’s” throughout this booklet. Von Willebrand factor is one of the proteins in the blood that works to make blood clot. In vW either there is a shortage of von Willebrand factor, or there is something wrong with its structure...