LECTURE: Patient out of the comfort zone Sander Otter (the Netherlands);
Patient organization NVLE
I am a bit out of my comfort zone here, normally when I am talking in public about the antiphospholipid syndrome, eyebrows are raised eyes popp out and nobody knows exactly what is going on, In Most emergency rooms dokters look flabbergasted When I mention my conditions and they have no Idea About treatment or the right diagnosis and I can see desperate face expressions… And you all do know so much …
It was not very convenient and in my personal past .This disknowledge had some great consequences. Imagine how my life would have been if my doctors treated me with anticoagulation therapy in 2001 when they discovered some strange spots in my MRI scan was made because of my severe headache attacks. they did not..
Now, unfortunately, It took six more years for finding the right diagnosis and one more for the right treatment. Meanwhile my brain was damaged irreversible. I have great difficulties with my energy levels, motor skills and I am no longer able to work in a paid situation. Ordinary things like driving a car is no longer possible and a speech like the one takes a couple of week preparation.
Understand me correctly, This Is Not an acquisition. My doctor’s tried there utmost, there was just not Enough Knowledge available.
At the time I was diagnosed with antiphospholipid syndrome there was little information. There was no good or bad, there was just nothing. My whole life changed and I had to invent everything all over again. If a patient is diagnosed “late” there is more work than adding anticoagulation.
With the right treatment I do have a good quality of life but I do suffer from the damage which could have been prevented with an early recognition.
It is my main motivation for all the volunteer work I do for my patients organization trying to raise awareness fast recognation and solide treatment for the antiphospholipid syndrome.
I know what it is to live with antiphospholipid syndrome on a daily base , it drove me out of my normal life. It had a great impact on quality of life. And Not only for me but also for my wife and child.
Treating and recognising the syndrome is something we will have to learn. As you know it is spread all over the human body. Therefore every doctor can meet the syndrome. Now I know for example my pulmonologist is having some great thoughts and even better results with M_TOR and the medication related to this immunosuppressant. But if I take a good look, I don’t see him around. So I really wonder and hope the information reach all of you. I think this is our biggest mission: make it possible to share all available information. Remember if you are good at something it gets better when you share!
At the moment I knew I was going to speech here, I asked my fellow patients… What is important? What should I mention, where should I talk about with this important audience. My mailbox flooded.
Most of the people were referring to the troubles with the right diagnosis, so I really think it is important to focus on quick testing and better And faster screening for people under fifty with a thrombosis. In difficult pregnancy’s there is lately some progress but also in this field is a lot to win.
One of the most mentioned items was the lack of knowledge. I think there is an important role for patients organization’s, but also for you, as experts. Spread the word, give lectures in your own hospital or comunity .Inform colleagues and coworkers and tell them where to find the knowledge … and keep repeating. And of course cooperate with your national patient organization or help Starting a national group, in our Dutch Patiënt organisation we really can prevent lots of damage with getting people at the right time at the right Doctor or provide a quick answer. Sometimes It is really making a difference.
In a bigger perspective I think it is important to develop guidelines and consensus about the treatment.
I know all kinds of patients with an high INR ratio lots of patients who with a low INR ratio and I as a nonmedical person can’t explain the difference. I Guess it is confusing For A newly diagnosed person.
Also when a patient needs surgery, I noticed it in my own case when I needed surgery myself. The surgeon said just stop with anticoagulation, the nurses says to stop … But my rheumatologist said absolutely not. I survived.
Now I am a big guy and I know something about hospital rules but I wonder what would have happened to me if I was a lovely obedient girl from somewhere in the middle of nowhere. Those are the people who need protection
In a topic about headaches I learned lots of people with antiphospholipid syndrome are suffering from severe headaches. I also learned most of them had a very low INR ratio. And of course I know the risks of high anticoagulation but I also understand quality of life. In my particular case my headache is gone ever since my INR is high above three. Quality of life is a big issue.
One of the things my Dutch patients said there were missing was a good explanation of the risk about treatment and the benefits.
And then there is something strange. My fellow patients did not mention it.
It is a big THANKS for you all guys and girls ,students ,doctors scientist and professors ,for all the things you discovered about the antiphospholipid syndrome, for the hard work you are doing ever since the syndrome was detected in 1985. Thank you for all all the testing, thinking, experimenting, essays writing and studying blood samples and all the things you discovered Please ,Keep up the good work Oh and if possible… Tried to hurry up a little
Thanks
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