In September, during the LUPUS EUROPE convention, we were delighted to welcome Jeanette Andersen to the board. She has written a little introduction for those who don’t already know her from her work in LUPUS EUROPE and Young PARE.

JeanetteAndersen04 head shot

“I was diagnosed with SLE in 2011, although I had had symptoms of the disease since the year 2000. I have a master´s degree in German and Philosophy from the University of Copenhagen and was a teacher in higher education until 2012.

Since I had to stop working in 2012, I have dedicated my time and energy to volunteer work for Lupus Denmark. In addition, I am a EULAR Young PARE working group member and now also on the LUPUS EUROPE board of trustees.

SLE has changed my life from a very active one, with a full-time 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. Despite the disease casting a shadow over my life, my positive attitude and outlook has made me find a new purpose and meaning in life by helping other people with lupus all across Europe.

Unfortunately, I have been in the hospital a lot for my beginnings on the LUPUS EUROPE board, but hopefully things will change for the better and I will be able to be more active in the near future. For now, my two main focuses in LUPUS EUROPE are on the young lupus patients and communication to our members.”

 

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1 week ago
LUPUS EUROPE

🚨 Call for patients🚨

🔊 INSPIRE SURVEY from the University of Cambridge.

This survey aims to improve the understanding of neurological symptoms in SLE and other rheumatic conditions.

Lupus is a very heterogeneous disease, which means that it affects people of different ethnic backgrounds and gender in different ways.

That is why, to get accurate research results, as many different groups as possible must be represented in the sample.

The INSPIRE survey was launched last year to get the patient experience on the assessment/monitoring of neurological symptoms, but they received very few responses from people from ethnic minorities.

That is why the research team led by Dr Chris Wincup has launched a new survey.

The new INSPIRE survey can be completed by lupus patients or their carers from around the world.

🟣 Please share as much as possible 🟣 in order to get a sample that includes a good proportion of all ethnic groups.

Thank you!

bit.ly/inspire_patients_short
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I did it a second time and no it went good till the end

The survey was demolished.

1 week ago
LUPUS EUROPE

Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. It is characterised by persistent scaly plaques on the scalp, face, and ears, which can progress to scarring, atrophy, depigmentation, and permanent hair loss in affected hair-bearing areas (Source: DermNet).

This study, published by Prof Marca Mosca et al., describes 2 cases of severe and refractory DLE successfully treated with anifrolumab, a human monoclonal antibody.

Although anifrolumab has been recently approved for the treatment of SLE, data from randomized clinical trials have shown a significant difference in cutaneous response rate in patients treated with anifrolumab from those in the placebo group.

While the effectiveness of this treatment in real life and in different types of skin lesions has yet to be determined, it could represent a new valid opportunity for treating DLE.

jamanetwork.com/journals/jamadermatology/article-abstract/2798967
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Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. It is characterised by persistent scaly plaques on the scalp, face, and ears, which can progress to scarring, atrophy, depigmentation, and permanent hair loss in affected hair-bearing areas (Source: DermNet). 

This study, published by Prof Marca Mosca et al., describes 2 cases of severe and refractory DLE successfully treated with anifrolumab, a human monoclonal antibody. 

Although anifrolumab has been recently approved for the treatment of SLE, data from randomized clinical trials have shown a significant difference in cutaneous response rate in patients treated with anifrolumab from those in the placebo group. 

While the effectiveness of this treatment in real life and in different types of skin lesions has yet to be determined, it could represent a new valid opportunity for treating DLE.

https://jamanetwork.com/journals/jamadermatology/article-abstract/2798967Image attachmentImage attachment
1 week ago
LUPUS EUROPE

We know some of you missed the great seminar recently delivered by Prof. Laurent Arnaud.

Well, no worries!

You have the chance to see it again, thanks to the European Federation of Internal Medicine (EFIM).

"Challenges in 2023 for Systemic Lupus Erythematosus".

Next 29th of March at 18:00 CET (i.e. Paris time).

Register for free here!

us02web.zoom.us/webinar/register/WN_O5yMwjfgTS29pMKvOZfgZw
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We know some of you missed the great seminar recently delivered by Prof. Laurent Arnaud. 

Well, no worries! 

You have the chance to see it again, thanks to the European Federation of Internal Medicine (EFIM). 

Challenges in 2023 for Systemic Lupus Erythematosus.

Next 29th of March at 18:00 CET (i.e. Paris time).

Register for free here! 

https://us02web.zoom.us/webinar/register/WN_O5yMwjfgTS29pMKvOZfgZwImage attachment
1 week ago
LUPUS EUROPE

Did you miss this ERN RECONNET webinar with Lou Kawka and Prof Laurent Arnaud about #fatigue in #SLE?

Now you have the chance to watch it!!! 😃🙌

www.youtube.com/watch?v=7jc7SiP5BsA
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Did you miss this ERN RECONNET webinar with Lou Kawka and Prof Laurent Arnaud about #fatigue in #SLE? 

Now you have the chance to watch it!!! 😃🙌

https://www.youtube.com/watch?v=7jc7SiP5BsA
LUPUS EUROPE Uniting people with Lupus throughout Europe
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