Ron Westerveld
Volunteer in Rotterdam, Nederland
I have von Willebrand Disease and I am going to sponsor the foundation I have setup with the Erasmus Medical Center in Rotterdam, The Netherlands. There is much to gain by funding research and development of the most common bleeding disorder in the world. Which is also the number one unknown bleeding disorder. As the research will be done by my university hospital. It is my goal to inform the world about bleeding disorders in general and von Willebrand Disease in special. As 5.175.000 people with a known bleeding disorder do not get the proper treatment or have access to treatment at all. I want to make a change for the better to bring the awareness across the globe, and hopefully get the attention these diseases need. Bruises will affect the bone structure which will result in immobilisation before untreated patients are 40, if they life that long in the first place. In the undeveloped countries people with a bleeding disorder like haemophilia inject themselves with 1 to 2 year old overdue medications as they can't buy fresh blood derivatives. For me personally the thought of injecting myself with 2 year overdue blood is horrific. My ship will be restored in a 100% constructive state by the wharf "Het Nautisch Centrum in Farnsum, The Netherlands after 40 years as they origally developed and build my ship. My university hospital will teach me how to save myself incase I get wounded and the will give some medications to go with me. The von Willebrand Disease has different grades of severity and sub grades even, all affect different blood factors and not 2 of the same types or subtypes have the same influence on the people who have it. The disease is discovered in 1929 and because it so mysterious the doctors either do not know about it or the still tell the strangest myths about it. I hope to change that by telling my story in every country I get too. Hopefully there will be charities who are willing to help the needed from all of these horrifying day to day struggles so many of us have to do to stay alive and for those who can't afford the medications they need. There are so many unnecessary deaths or immobilisations in the bleeding community that it is the best discretion to call it a silent humanitarian disaster hapering today in every country even in the developed world is this an issue of life and death.