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When I got my lupus diagnosis in 2011 I was a very active young woman with a teaching job and on my way to study for a PHD at Aarhus university. I have a master’s degree in German and Philosophy and I loved teaching. I used to be a fitness instructor during my studies and keeping in shape meant a great deal to me and my well being.

I have had many symptoms of lupus from as far back as the year 2000, but I never thought to connect all the elusive symptoms like hair loss, joint pains, headaches, fatigue and depression in one disease. My husband and I were on our honeymoon in Bali when I got my first real flare.

We had planned a guided tour around the island but after a few days I started having fewer. The fewer went up and down a lot, but since it was my only symptom and there was no doctor nearby, we went on with the tour. After four or five days I had the opportunity to see a doctor and he took a blood test and gave me antibiotics. There are no laboratories on Bali, so the blood test had to be sent to Java for analysis, which takes four to five days. While waiting for the results I suddenly one evening had difficulty breathing and my chest started hurting. I was rushed to the emergency clinic, which consisted of a small open room with chairs and tables for examination. It was mostly used for the many motorbike accidents with scrapes and bruises and did not have the equipment nor the space for a patient like me. They thought I had an asthma attack or maybe a lung infection, so they treated me with a nebulizer and antibiotics in IV, which did not help at all. I got worse and worse and was brought to a larger hospital in Denpasar, the capital of Bali. They took x-rays of my lungs and saw I had an infection, which they treated with more antibiotics. This did not help at all, however, and I got to the point where I passed out and was brought to intensive care. I was hooked up to a lot of machines, which monitored my vitals and alarms kept going off because my body was giving up. My attending doctor was convinced I had a bad pneumonia and just needed more antibiotics, then I would get better. From my wedding day I had had a horrendous headache and this only got worse while I was in hospital. Some very nice nurses noticed this and called in a neurologist to have a look at me. She was the first one to really have a good look at my body and she noticed I had rashes on my legs, arms, chest and face and she had an idea, what it might be, but didn´t tell us. She performed a brain scan and called a rheumatologist and he had one look at me and told my poor husband: “Your wife has lupus”. Of cause he had to take tests to be sure, but he was so convinced he was right, that he started me up in 1000 mg. of corticoid steroids. After only two hours my body started to respond to the medication and the vital signs very slowly returned to normal. My husband did not believe, that this serious episode could be caused by arthritis, but he borrowed a computer, went online to the Danish arthritis association’s home page and read about lupus and suddenly all my symptoms from the past 11 years made sense. While I was recovering new tests were made and they all confirmed, that I had lupus. It manifested itself in my lungs, my heart, my brain and my central nervous system. After two weeks’ time I was so stable, that I could travel back home.

My lupus has turned out to be quite aggressive, partly because of my late diagnosis, and today the illness combined with side-effects from the medication has left me walking-impaired and a lot heavier than before. I am no longer able to work-out like I used to and a chronic headache alternating with migraines means I am no longer able to work. Since I still have my good education and I really needed to do something meaningful in my everyday life, I started as a volunteer in the Danish lupus association in 2012. I found such satisfaction in this work, that I have taken on more and more work since then. In 2014 I became a working group member of EULAR Young PARE and last year I was elected into the LUPUS EUROPE board. By volunteering for these organisations, I have the opportunity to help other people with an RMD, while still taking care of my own disease by only working, when I have the health and energy for it.

Although SLE has changed my life from a very active one, with a fulltime job and a lot of fitness in my spare time to a condition, where I am immobilised in a wheelchair and can work only a few hours a week, I have found a new purpose and meaning in life, by helping other people with RMDs all across Europe.

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13 hours ago
LUPUS EUROPE

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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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14 hours ago
LUPUS EUROPE

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! 😃

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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
22 hours ago
LUPUS EUROPE

🚨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.

Registration is compulsory.
... See MoreSee Less

🚨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/

2 days ago
LUPUS EUROPE

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 🇬🇧 🇩🇰 🇩🇪 🇪🇸 🇬🇷 🇫🇷 🇮🇹 🇳🇱 🇷🇴 🇫🇮 🇺🇦.

More languages to come soon! Stay tuned, and don't miss it!

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Grazie

💜💜💜

LUPUS EUROPE Uniting people with Lupus throughout Europe
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