A few things came together last week. I met Graham Hughes, the rheumatologist who first described the antiphospholipid syndrome, and I was not only a speaker at an international anti-phospholipid syndrome forum, but also had the opportunity to participate in the social program.

Special thanks goes to my patients organisation ,the NVLE ,who provided the reimbursement of my travel and accommodation costs and also to the mother of our son who played door guide and helpline in this occasion .

The patients day

Graham Hughes, for example, is starting to get older and although I have met him once, I thought it was such a fascinating man that was pleased to meet him again . Apparently I made an impression the first time … I gave a lecture at one of his patient meetings … eight years ago… and he remembered.

Now I was allowed to enjoy a relaxed patient day because nothing was expected of me. Well that is not something I am very good at, so I just did my being me thing and had good conversations with the people of lupus UK and the people from the Hughes Support Foundation.

Of course also with the present speakers such as Dr Arvin Kaul, a leading English lupus specialist, Natasha Jordan as a specialist in pregnancies with lupus and Kay Pryslak, the author of the book “stickie blood”.

To start with the last, it seems a great idea to write a book about my experiences with the anti-phospholipid syndrome in Dutch, but at the moment my agenda is too busy. I do see a lot of similarities between me and her. We are both a bit annoyed by the lack of knowledge that we both have write it … in our own way and apparently in our own time.

The magic bullet

Strange it sounds so much better in English, The magic Bullit … would that be the reason everyone speaks English everywhere? Of course, the search for the magic bullet was also discussed in London. The ultimate treatment or rather healing of the APS patient. Unfortunately, they have not found it yet. A remarkable difference with the rest of the world is the fact that in England still a higher INR (the thickness of the blood) is propagated as the most important value in the blood..

With a good evening meal at the international train station we found our way back to Brussels and exchanged the British mainland for European feet on earth. In the field of international high-speed trains, we still have as much to learn as about APS, although I must say that it is encouraging that the return journey was better than the outward journey.

Home is … where the starting point begins!

As you might know I still want to make all the knowledge about the antiphospholipid syndrome available for the normal guy. But when I heard there was a big international congress in my neighbourhood(Maastricht is only 300 km away) I was interested in the possibility to join in some way.

So it was possible that my name adorned the program somewhere in the middle of the first day. A crazy opportunity, of course, that has driven my family to impossible craziness. With my non-congenital brain injury as a result of APS, memorizing a speech is a process of continuous repetition, rehearsal and repealing again…

As soon as I started with the words “I am a bit ….” my family members shook away in every corner like snowflakes in the summer sun. Sorry about that, but that is what it takes to get this speech through. With such a important international audience I didn’t want to leave anything out nor forget something , but tell meaningful thinking which matters.

I did it!

Now you have to imagine that such a large medical congress is pretty exhausting. The pace is high, the subjects being treated are pretty complicated and even the professionals sometimes have two admit that they occasionally needed additional information to clarify things.

The conference was divided into several parts and the day started with a refresher course in serology, in which the interaction of antibodies with germs and body proteins had the main focus.

It was pretty complicated, and I believe I even so some professors blink their eyes. For me the most close experience to all  this stuff is drawing a number at a local hospital for a blood draw.

After a few lessons on the risks and qualification, the difference between the different test methods, the interaction between the different LAC (Lupus antibodies Coagulent), the interpretation of the aPL antibody, the interaction between IgM test results from a differential dossier study and finally a presentation of Rolf Urbanus about the lupus anticoagulant paradox it was time for a short coffee break that we also had to share with the viewing of the poster presentation. It was only 10:00 in the morning!

Just reading through the above paragraph cost me crazy energy. Let alone listening with attention, in addition in English because that was the language of communication! I think you understand what our doctors have to endure from time to time to keep up with a discipline. Respect for that!

What they had to endure was a speech from a Dutch patient at the end of the second part, just before the otherwise excellent lunch. The story is in both Dutch and English on my website so I will not repeat myself here , … but I did it!

Was it as brilliant as I had hoped? Well no, not entirely, I do not speak important people every day in English and I got a little nervous halfway through the speeches. Maybe I skipped a few letters somewhere … But otherwise they went great. I received a long applause and that was. I learned about the real impact long after giving my speech.

That was actually the brilliant part of the plan. I was not only present for my speech, but I also ran the entire social program. So during the day I was approached several times, now clearly recognized as a patient, by the various doctors who wanted to know something more. And have some interesting ongoing talks.

Impact

And there you notice the true power of the speech. The carefully chosen words seem to touch a lot. Doctors think about quality of life but also seize the opportunity to discuss this with an expert. Apart from an exceptionally pleasant barbecue on a Limburg mountain, it was useful for both me and the doctors to have these conversations.

Contacts are made and the last word has not yet been spoken. That is exactly why there is such a social program attached to such a conference.

After one and a half days of rock-hard networking, the congress was over and I was looking forward to a three-hour train journey. For a while you know English but some  music on my head and enjoy the big nothing … Until the famous Dr. Richard Furi stepped into the same compartment and sat down next to us. Well as a experienced APS lobbyist, you just have to do your thing ….

* A nod to the book by Graham Hughes, the tales of a flying doctor.