My name is Anna – 66 years old, I am Polish and I live in Warsaw . I am suffering from syringomyelia a rare disease which has been diagnosed after few years of searching in Poland, Ukraine, Germany , France and US.
I intend to start a blog and not only … about syringomyelia and Chiari syndrome but also about pain as it is a part of our everyday life. The idea is as follows: page one will be in Polish for Poles interested (also about the situation when it comes to those rare diseases in Poland, page two will be in English for all those interested in those illnesses – patients, organisations, doctors etc. I would like to make a blog among other things to discuss if we are having the same problems and what is being done for patients in our countries, what can be expected from NHS, whom you would recommend as an expert in your country and so on.
As these diseases are connected with chronic pain and are extremely hard to cope with I am looking for people who have knowledge about pain + these rare diseases and who would like to join in.
I thought maybe you could recommend somebody or an organisation ? ? I would like to publish every 6-8 weeks some information from the world if I get, of course, people interested.
In the mean time I have done a few things among other:
1/ a petition to the European Parliament to introduce standards for chronic pain treatment for all citizens of the European Union (2014) link https://youtu.be/E6nsSuXFaC8
2/ videos (2) – concerning our rights – treatment of chronic pain (2017) https://youtu.be/nXVHkesTDNA and another one concerning Syringomyelia and Chiari Malformation https://www.youtube.com/timedtext_editor?action_mde_edit_form=1&v=-FUgFEQtOoM&lang=pl&bl=watch&ui=hd&ref=wt&tab=captions&ar=1595687072092&o=U (2019)
3/ Artists Against Pain – Milano 2018
4/ together with the Medical University of Warsaw http://chiari.pl/ – 2019