I only want to thank you

I`m writting these words only to thank you for uploading here the audio from the Patient´s Day.

I am Spanish and live in Spain. I can´t find APS groups here, They are only LUPUS groups and none of them is near me. APS' investigation is not as advanced as in your countries

Since I found your website I feel like I am not alone. I have been able to answer myself lots of questions because I get a huge amount of information here. Your worries are my worries too, your doubts, your fears...

After hearing so much about prof. Hugues, when I started listening to his words and his voice (while I was driving to work), it moved me. It was fantastic sharing all that information about investigation, new anticoagulants, other people with APS,.. All of you gave me hope and understanding.

English is not my mother thongue, as I said I am Spanish. Today, I have an effort to do: listen and translate into a paper the biochemistry part (that domain founded...) to show it to my doctor.

THANK YOU VERY MUCH WITH ALL OF MY HEART

11 Replies

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  • Thank you for such great feedback.. and on such a sunny day here in the UK, or at least where I live. Mary F x

  • It really is our pleasure, and having your comments it makes taking the time to volunteer on here all so worth while! xx

  • Hi Swirl

    Glad the group and the resources have helped but you know there are quite a few of us living here in Spain. I know I am lucky because I live in Madrid but Spain is actually one of the more advanced countries for APS and has some of the top doctors in the world, not just here in Madrid. Also it is taught to nurses and drs automatically during training which it isn't in countries like the UK.

    It is a question of finding the right specialists (as always) for the real help and Prof K and Prof Hughes can help us locate specialists here as they are often here for conferences and Prof K actually studied here in Spain (a few years ago now). If you want to let me know where you are and if you are not happy with your specialist then let me see if I can help you find alternatives...? No me importa si hablamos en español...

    Un saludo

    Louise

  • Louise, I’m so pleased that you have had a good experience of medical treatment here in Spain. So I hope what I am about to say doesn’t sound too controversial when I say I don’t agree with you on any level that Spain is one of the more advanced countries in the treatment of APS or SLE for that matter. Have a read of my blog which I posted first thing this morning. It talks about my treatment here in Spain and how I very nearly lost my life to the ignorance of the medical team I had. Through their negligence I have been left severely disabled and with the possibility of having one of my legs amputated.

    Best wishes from here InSpain xxx

  • I know you have had the worst of it and I also had the misfortune to have a 'specialist' here who put my life at risk. However I have encountered more good than bad and was referring to the fact that the top research, the drs participating in pushing knowledge forward, the ones attending the worldwide conferences come from here. It's a question of finding them. I got lucky, I know Prof K has the best contacts here and it is therefore the best avenue to finding those with knowledge.

    I hope you are now on the road to recovery. I promise I will read your blog when life gives me a chance to!

    Louise

  • When life gives you a chance can you put some links on this forum of the specialists in Spain who are pushing forward with research and the papers that they have written please? I, like at least 25 others who I know of living here in Spain, cannot find these links on the internet.

    And no unfortunately, I'm not on the road to recovery which you will see when you get a chance to read my blog.

  • Thank you so much for such positive feed back. Having been a regular at St Thomas, for the last 12 years I have met with at least 5 Spanish Doctors working with and being trained by Prof H Dr K and Prof H. Their understanding of my autoimmune conditions (Sjorgens, APS, Hashimotos and Gluten problems) have given us the confidence to regularly holiday in Spain. Until I read your feedback I was ready to pack up my Coagucheck and jump on the next flight home.

    Won't it be amazing if someone could tell us where in Spain, apart from Madrid, we can find the specialists we may need.

  • When I saw Prof K on Friday he had a spanish Doctor with him and he always seems to have one everytime I see him too. I think it is his intention to train Spain's Doctors in APS from St Thomas's single handedly!! :-) And I should add that not only should I add that he teaches them about APS but he also teaches them to have a good bedside manner and how to treat the patient properly, lessons never usually taught by doctors. When I say taught I mean shown by example....you dont have to be rude and arrogant to get the respect of a patient!

  • Couldn't agree with you more! Have a read of my blog which I posted this morning xxx

  • Jajaja...tell him to continue spreading these words in order to make more sensitive every doctor on Earth.

    My doctors don't believe me when I tell them about my memory and concentration problems. To me, is the worse part of APL (apart from spending hours and hours at hospitals). It affects me in everything I do and I'm starting to have problems at work because of my brain

    fog.

    My docs have sent me to psich. And neurologist prescribed me antidepressives and that psichiatric doctor says I dont need it because I am not depressive, she says that my brain fog is due to APS and my previous brain thrombosis and the neuro was the only crazy one here! As you see I'm in the middle and I am the one that is afraid of working (I am a nurse) because Im making mistakes. Its frustrating when only your family believes you but not the society.

    I am a nurse, I hadnt heard a word about APS before. My work mates dont know anything about it and they dont care. Most of the information I Know is because i looked for it in internet. my haematologist recomends me self testing coagucheck and my internist doesnt. Again in the middle

    My doc is always testing me for Lupus but he doesnt tell me if he thinks I have it or not. The fact is I have lots of synthoms I cant explain because they say APS only causes miscarriages and clots....and if its not Lupus, what is it?

    I live in the south of Spain, if someone wants to share information with me, just write!!

    I would like to live out of Andalucía to have trained docs in APS near me. I just need to talk somebody that understand me

  • Absolutely Swirl I couldn't agree with you more! Kisses

    Absolutamente Swirl que no podía estar más de acuerdo! Besosssssssss

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