Looking for 1000 people to fund an ‘impatient’ revolution
For the last seven years I have been committed to my (life) mission to create awareness about Lyme disease and its implications for many. This far I have financed it out of my own resources. Now I’m asking for your financial support to continue my priceless work for many, as an independent writer, researcher and human rights worker. Read more how you can already join with 1 or 2 dollar per month, what you will receive in return and give forward to others.
Introduction to Lyme
Lyme disease is the fastest growing infectious disease of our time, with more reported new cases than breast cancer and HIV infections. However, because of the way Lyme disease has been coded, defined, underfunded, managed, treated and perceived during the last forty years, estimated millions of ill people around the world are now invisible. They are too often told that the cause of their severe ailments is ‘all in their heads’ or are simply misdiagnosed with incurable diseases such as MS, ALS, ME, Alzheimer, Parkinson, Chronic Pain Syndrome, Fibromyalgia, Lupus and numerous other diseases, some of which you can find in the image above.
Most doctors only start to understand the severeness and complexity of this disease, once they become ill themselves. Millions of ill people – including these doctors – are simply disappearing from social life, because somebody else tells the wrong story about them. A story that violates our most fundamental human right: the right to dignity.
My ways to create awareness
Most people still hope that governments and the medical-scientific systems will provide solutions for them and for future generations. I have been working on other ways to shift the Lyme paradigm. As a social researcher my role has been to document and communicate the devastating social, emotional, financial and legal consequences of the current myths and misconceptions around Lyme and to build alliances with other professionals who defend the human rights of similarly vulnerable and neglected groups of ill people.
I have written the book ‘Shifting the Lyme Paradigm; the Caretakers’ Guide on a Hero Journey’, available in both English and Dutch, which have been read by both patients, their caretakers, scientists, thought leaders, open-minded doctors as well as world renowned human rights experts. You can find several of their reviews on the public post section. Next to the book, I published over 100 well-researched articles and 270 interviews on the On Lyme Foundation’s website, which have been read by over 350,000 readers.
I have also contributed on two critically needed reports for the United Nations (UN), documenting both how the current ICD codes of the World Health Organisation (WHO) lead to human rights abuses of patients as well as the corruption of colluding state actors, insurers and certain medical entities to maintain the status quo. Together with professionals who understand both what is going on and what to do about the current unacceptable situation through appropriate channels like the WHO and the UN, we are already creating movement towards real solutions for countless ill people.
I believe it is high time that patients become ‘impatient’ and learn how to effectively defend their own human rights to dignity and access to care. And I would invite you to join this campaign and actively support me to keep stirring this impatient revolution up.
For the last seven years I have been committed to this (life) mission and have financed it out of my own resources. Now I’m asking for your financial support to continue my work for many, as an independent writer, researcher and human rights worker.
My first goal is the amount of $2,200 (2,000 euro) a month. With your support, I first of all intend to simply continue my work like this and be able to take my work to a greater level of impact. There are still many stories that need to be told, topics that need to be researched and addressed, processes that need to be disrupted, alliances to be build and both disruptive and constructive strategies that need to be created.
Your contribution will also allow for everyone to keep having open access to the information; including those who do have not enough money left to buy a book. When for example a thousand people are willing to chip in two dollars a month, I will be able to continue creating Lyme awareness for (hundreds of) thousands of others – without needing to put a ‘pay wall’ or price tag on my work.
Every level of monthly contribution has its own ‘reward’, named after different levels of involvement in a sports game. Given the nature of my work, these rewards are designed from inclusion (e.g. sneak previews of new articles or interviews), tailored overviews of the international ‘battlefield’ towards co-creation (personal consultancy for professionals).
How to join?
I fully understand that many patients themselves have very few resources to spare. Any donation will help to create awareness about the Lyme pandemic and ultimately to bring more sanity in the current ‘health care’ system. You can do so by giving a monthly amount of your own choosing, which you can stop anytime you want. And if you do endorse this campaign but don’t have any money to spare, sharing it with your own network and on Social Media is also helpful. I am deeply grateful to all who enable me to continue shifting the Lyme paradigm.
www.patreon.com/huib Go here for more information