My Lupus story doesn’t start in 1993 with an SLE diagnosis, but eight years earlier in 1985, when at the age of 22 I got pneumonia for the first time. O spent two weeks in hospital with a horde of doctors around my bed wondering why antibiotics weren’t working. The oldest doctor mentioned that I may have a condition called LED (an old name for Lupus, still used by some doctors in Finland). At the time, it obviously didn’t mean anything to me, I didn’t look it up in a library, but it relupus finlandmained in my memory. Luckily, the antibiotics worked shortly after and I went home to recover.

The following year I was accepted to university to study English Philology, the history of language and culture and linguistics. My first one and a half years as a student were bliss, but then everything changed. I had pneumonia every other year and repeated bouts of bronchitis in between. That made me skip many courses but I was able to finish them later, when I felt better. In January 1993, I was in a middle of my teacher training when a persistent temperature took me to a university hospital for a couple of weeks, where I was diagnosed with Lupus.

Lupus explained the many symptoms I had been having on top of my lung problems. I had achy swollen joints, sun sensitivity, leukopenia, anaemia and red patches on my arms and legs. It was most active for 10 years, during which time I also had pericarditis twice and myocarditis once. Twice, a sudden rise of temperature where I developed pneumonia in a couple of hours and was taken to hospital in an ambulance.

Despite Lupus I had a child in 1995. Thanks to specialised neonatal care, I was able to give a normal birth to a healthy girl, who is now 21 years old. She has had no symptoms, for which I am very grateful.

Looking back now on the active period, the medication seems to have worked and I slowly recovered. I took cortisone for ten years, azathioprine and methotrexate for a while. The latter two didn’t suit me, but I think they did their job anyway, because my Lupus went into remission 12 years ago. In 2004 I was able to stop taking cortisone and my Lupus has remained dormant ever since. I took hydroxychloroquine during the ten active years too, but then stopped taking it. In 2012 I felt my Lupus may be becoming active again and started taking hydroxychloroquine once more. It may have helped and stopped an active disease flare up, who knows?

Although Lupus has been a pain in the butt and has created obstacles in my life and made life a bit more challenging, I have been able to do all I have dreamt of. I finished my studies in the end and took out both BA and MA degrees in English Philology, philosophy and teacher training. I worked for 16 years altogether as an English teacher, then I retrained in accounting and still have a job as an accountant. Another dream that worked out well was to have a child, and that happened too. She is the light of my life.

It seems I was one of the unlucky ones to get Lupus, but having said that, I also feel very lucky that my Lupus is dormant right now. No-one knows how it will go in the end and my Lupus may become active again, but I don’t want to think about that and so I live life one day at a time, doing things that interest me most. Lupus has taught me to be happy about simple things. Lupus has also introduced me to wonderful people around the world that I most probably would never have met. As I see it, having a chronic illness makes one enjoy and respect the good days and make the most of one’s life.

Kikka is a member of Lupus Finland – SLE-yhdistys ry

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12 hours ago
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Thank you Martijn, for your question! We will ensure your question is raised 🙂

Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃

Hi from Corfu thank you for this it was really helpful!!!

I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.

There are huge differences!

Are there possibility’s with food to have remission

There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?

Only on my phone de zoom started. I do not know why

Metty Staal volgt

What is there to expect the coming years. I mean mean in treatments?

Thank you very much professor Arnoud

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13 hours ago
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Our joint webinar with ERN RECONNET is also going on Facebook Live!

If you have not been able to register, go to our Facebook Page and enjoy "#EULAR2023 Debrief–for people living with #lupus".

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Our joint webinar with ERN RECONNET  is also going on Facebook Live! 

If you have not been able to register, go to our Facebook Page and enjoy #EULAR2023 Debrief–for people living with #lupus.

1 hour to go! 😃

https://www.facebook.com/LupusEurope
21 hours ago
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🚨Don't miss our webinar today🚨

Along with ERN RECONNET, we have organised this "#EULAR2023 Debrief–for people living with #lupus" webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).

Register by sending an email to secretariat@lupus-europe.org now!

This is the link to the webinar: us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

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🚨Dont miss our webinar today🚨

Along with ERN RECONNET, we have organised this #EULAR2023 Debrief–for people living with #lupus webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).
  
Register by sending an email to secretariat@lupus-europe.org now! 

This is the link to the webinar: https://us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

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Not succeeding to send an email for registration. I would like to participate. Thanks

Joy and happiness is all i see around ever since i came in contact with this great man. i complained bitterly to him about me having herpes only for him to tell me it’s a minor stuff. He told me he has cured thousands of people but i did not believe until he sent me the herbal medicine and i took it as instructed by this great man, only to go to the hospital after two weeks for another test and i was confirmed negative. For the first time in four years i was getting that result. i want to use this medium to thank this great man. His name is Dr aziegbe, i came in contact with his email through a friend in UK and ever since then my live has been full with laughter and great peace of mind. i urge you all with herpes or HSV to contact him if you willing to give him a chance. you can contact him through this email DRAZIEGBE1SPELLHOME@GMAIL .COM He also cured my friend with HIV and ever since then i strongly believe he can do all things. Don't be deceived thinking he does not work, i believe if you can get in contact with this man all your troubles will be over. i have done my part in spreading the good news. Contact him through his email and you will be the next to testify of his great work. web.facebook.com/Herpes-std-cure-dr-aziegbe-herbal-cure-103360314788997/

1 day ago
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One of our PAN members explains to the Italian lupus community what is #Lupus100 and what it can offer: high-quality and reliable information about #lupus in a patient-friendly language!

At the moment, available in 🇬🇧 🇩🇰 🇩🇪 🇪🇸 🇬🇷 🇫🇷 🇮🇹 🇳🇱 🇷🇴 🇫🇮 🇺🇦.

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Grazie

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LUPUS EUROPE Uniting people with Lupus throughout Europe
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