It is a busy period for me, beside my normal medical issues, I have some problems with my lungs which brings me three times a week at the hospital to work on my endurance. And then there is of course all the work I do voluntarily for the Dutch lupus Association (NVLE).
At the moment it is hard work for several purposes but overall it is Anti Phospholipid Syndrome which is given me the most work. Not only the meetings for project ARCH, the gift from the Dutch Rheumatism foundation with the goal to improve treatment and better understanding for several diseases like scleroderma lupus and antiphospholipid syndrome, but also fun things like visiting London.
I had a great meeting with Prof Graham Hughes, the rheumatologist who described antiphospholipid syndrome in 1983 or was it 1985? We have met before but since he is partly responsible for my survival of this syndrome (as you perhaps can recall it was his information on the Internet which helped me to survive and now is giving me the energy and drive to make this syndrome famous)
of course the meeting was great and meeting the professor was outstanding. But there are also other persons and I was recognised by someone who was there as well at my previous visit eight years ago. I did make some impression…
The other lesson here to learn is the Eurostar train. Pushed together like sardines in a can this train brings you in two hours from the mainland. I experienced it as a nosy troubled an environment, but it beats swimming.
Anyway, visiting London, as short as it was, gave me some opportunity to polish my English which I’m going to need the next couple of days.
I am visiting the 11th MEETING of the EUROPEAN FORUM on ANTIPHOSPHOLIPID ANTIBODIES which is held in Maastricht. I noticed quite an impressive programme on the antibodies and also lots of interesting speakers. Did I mention I was one of them?
The organisation gave me the opportunity to speak from the patient’s perspective. After all the patients are those we are working for. Next week my speech will be found in English on this place I hope my speech will contribute to a better understanding and better treatment for those who suffer Anti phospholipid syndrome.
