The fight to bring awareness of the von Willebrand Disorder across the globe.
The Goal:
To earn money by making a documentary about the earth's population in remote areas. Publish them on YouTube and earn the money to donate for 100% . To get more Research and Development done. In the mean while I will attract the media's attention to create Awareness and Education for Medical staff and patients on a global scale.
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Advance Your Education, Kick Start Your Knowledge.
The von Willebrand Disorder is a coagulation disease that has many different severities and for each of them another outcome. We all bleed easily, and mostly times have bruises. But an artery can get damaged at any moment in time even with the consequence that we end up in the hospital for 1 day or weeks on an end. Just as I have when I was a teenager. As a child I was black and blue so severe they thought in the hospital my parents abused me, so they informed the police.
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Some of us in the severe cases and without the proper medical treatment end up in a wheelchair before we get 40. This happens when massive bleedings has infected our bone structure. Read my blog about this!!
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This disease can effect children, women, men and even animals. Please be aware of this fact. Every creature with blood can get it. A lot of doctors do not know this fact. They believe only man can get it as I was told in 1981. Doctors stil tel this story.
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The disease was discovered in 1926. Even now in America, Canada, Europe, and countries all over the world there are doctors who are not aware of this disease. There are also doctors who will tell their patients they cannot contract it. This is the reason for me to earn money and make the world aware. There are people dying unnecessarily, due to the lack of knowledge. This is the most common bleeding disorder. This is where my fight starts. My copyrighted idea to earn enough money to save lives, educate people and medical staff around the globe, and most importantly raise awareness about this disease.
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The bleedings are the worst when we are young. As the arteries are getting thicker when we get older, but massive bleedings weekly are not an exception. I have been hospitalized for 15 times; just because an artery snapped. This happens 24/7 in the human body. And I have a mild form of the disease. Type 3 to be exact, I consider myself lucky.
As we get older our arteries and blood vessels get thicker. Still, a sudden nose bleed that keeps bleeding for 1.5 months is no exception.
70 % of the people with von Willebrand Disease doesn't have the access to the proper care, or has no access to care at all! 1 or 2 % of the people have vWD but only 1 on every 10.000 have it problematically. 580.000 people are registered. So we are still a few 100.000 short. Every living creature with blood can get this disease. I hope you get the picture of the need of bringing awareness across the globe. Accidentally they notice that I had a bleeding disorder otherwise I would not have survived my tonsils extraction. I would have drown in my own blood at 7 years old.
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We start in the summer of 2016 after 7 years of preperation.
We start in the summer of 2016. It took 7 years to come this far. From having an idea to realizing it in reality. With a 39 year old ship in a brand-new state. To inform the public and educate the medical staff across the globe and doing so earn money to donate 100% hopefully others might get better medication in the future. If nobody does it, you have to do it yourself. At the age of 42 I have to do this. The pains are the worst suffering for us. The joints are painful!
Be a part of
Saving human lives & prevent unnecessary disability caused due to improper treatment or the lack of treatment.
Sign up to follow us in our fight and check our Facebook page for more information on how we take on this fight. We do ask for support by liking our Facebook page and share it with your friends or donate some money.
Follow the link or use the QR-Code below for more detailed information.
Please check out my blog with the information why this is desperately needed. And information what vWD is and real life stories. People across the world are looking for answers and giving feedback simply because a most doctors haven't a clue what this disease needs and will harm people unnecessary hard.
June 30, 2015
Sponsors who are helping with this project in saving human lives and inform people and hospitals that this disease exists
The shipyard:
The sponsor who is restoring my 39 year old ship in a 100 % construction safety "The Nautical Centre in Delfzijl, The Netherlands.
Het Nautisch Centrum Delfzijl are the best boat builders there is and I know, saw and rely completely on their expertise. I am gladly putting my life in their hands as they are the first sponsor and I could not wish for a different one.
And of course they do not make only wooden ships, but they still have the craftsmanship for the old wooden boats.
And this craftsmanship is hard to find these days.
They are simply the best there is in building handicraft wooden, polyester and steel ships.
And they are the best in Refits, Spray and paint jobs.
I have all the faith that we get it done and we fight the fight for the awareness and better treatment as educate medical staff around the globe. Not recognizing von Willebrand Disease can end up in either an unnecessary death or end up in a disability. I am sure we both come out on top.
Thank you Roelof Niezen CEO of the Nautical Centre in Delfzijl, The Netherlands
Solbian Solar panels.
A company in Italy is willing to sponsor me high end solar panels for my life's goal. Thank you Solbian for this generous offer. You make the best walkover solar panels there are. Which is perfect as my ship is only 7.15 meters.