Marleen (32) werkte als psychiatrisch verpleegkundige, totdat zij enkele jaren geleden ineens steeds zieker werd. Zij vond de oorzaak van haar klachten en vond ook een arts die haar goed kon behandelen. Maar haar ziektekostenverzekeraar IZZ weigerde dit te vergoeden. Toen haar vader ontdekte hoeveel zieke mensen zoals zij in de verdrukking komen door oneigenlijke argumenten, startte hij een rechtszaak. Zijn insteek is om zowel vergoeding voor Marleen af te dwingen als jurisprudentie te creëren waar andere patiënten door geholpen zijn.
Parents with ill children seem to have regular trouble with the Dutch Child Protective Services. Over the last month there has been a lot of media coverage on this subject. Now the BVIKZ, the Dutch interest group for parents with chronically ill children, is collecting cases to investigate how often this happens. They specifically look into Lyme and the hidden misery of caring parents, who are accused of 'child abuse' or 'Munchhausen by Proxy'.
When Liesbeth found out after 35 years that Lyme had been the real cause of all her health problems, she assumed that her situation would improve. Although she was indeed glad with the diagnosis and the start of her treatments, as described in part 1 of her story, it also got her completely stuck. Because she did not have her job anymore, she ended up in the maze of disablitity benefits bureaucracy. That's what this second part of her story is about.
Until the age of eighteen, Liesbeth was a cheerful young lady who loved to be outside and amongst people. Then she fell ill and never recovered. Now it is 35 years later and only two years ago she has found the cause for all her complaints: Lyme and a number of co-infections. Until that time the only medical advice she received was to drink a daily Yakult. Instead of a right diagnosis now helping her, it actually got matters worse. This is Liesbeth’s story, in two parts.
In 2009 the Dutch Federation for Lyme Patients started a national petition to influence Dutch national policies concerning information, testing and treatment of Lyme Disease. In 2011, this initiative was followed by a survey by the Ombudsman Foundation. Because both initiatives seem to be unknown to everyone outside of the Netherlands, we post this blog as a summary in English.