LUPUS EUROPE is delighted to invite you to participate to its Kick lupus 2018 “Word Cloud” contest (*)

There are so many ways to Kick Lupus a little (or a lot) further away!

This year, the “Kick Lupus Workgroup” came up with a motto: “Kick Lupus – Pushing the limits to reach a better quality of life”. This connects very well to our next convention theme which will be “restoring hope”.

We invite all people living with lupus in Europe, their family and friends to participate:

For YOU, what is “Kick lupus?”

Build a word cloud that expresses what “Kick Lupus” means to you, and how you can “Kick Lupus” every day…

and send it to kirsi@lupus-europe.orgby September 1, 2018.

The best word clouds will be displayed on our website, and the winner will be invited to present its word cloud to the LUPUS EUROPE Convention end November 2018.

(*) Some important details:

– A word cloud is a way to assemble key words of relevance to the topic, using different sizes and colors to draw attention to the respective importance of each of them. Words assembled can then form a cloud shape… or any other attractive shape. You can find (free) word-cloud apps on internet, or draw them by hand and scan them.

– Submissions will be evaluated by a Jury appointed by LUPUS EUROPE Board, giving an important consideration to the content of the cloud, rather than merely the artistic appearance.

– Submissions will be received from today until 1st September 2018

– By sending your word cloud, participants agree to its use and publication by LUPUS EUROPE without payment of copyright.

– Word clouds can be made in any European language. However, we ask to please provide us with a translation of the words used (which can just be a list on a separate sheet) to help the Jury assess fairly the word content.

For more information, contact Kirsi@lupus-europe.org  or the secretariat@lupus-europe.org

We are delighted to inform you about the launch of the 2019 Edgar Stene Prize Competition. At the Opening Plenary Session of the forthcoming European Congress of Rheumatology in Madrid, Spain, on 12 June 2019, the Edgar Stene Prize will be awarded to the winning essay on the topic:

“My ideal employer – Work without barriers for people with RMDs”

EULAR invites people with RMDs to write about their personal experiences. We all want to live life to the fullest and independently and work is an essential part of our life. Be it paid work, voluntary work or looking after the family and a household, this can be a challenge for people with RMDs. What measures, aids, attitudes by employers – this can also be the family, society or the organisation or institution you would like to volunteer for – can support people with RMDs to be able to work in their dream job, or look after a family – we want to hear from you this year what should your ideal employer offer to you to make your work more accessible and manageable – or if there is already something which is reality we want to hear your best practice examples!

As in the past, we encourage our national EULAR member organisations of PARE to organise national competitions for people with a rheumatic or musculoskeletal disease (minimum 18 years of age). Competitors should be invited to submit an essay not exceeding 2 pages (A4) in their own language to their national EULAR member organisation of PARE. The deadline for the national completion will be set individually by each national organisation. Anyone who would like to submit an essay should get in touch with their respective national EULAR member organisation for further information.

Each national jury should select and submit the best entry from their country (only one entry) by email to the EULAR Secretariat by 20 January 2019. A more detailed outline of the rules can be obtained by contacting the EULAR secretariat. Please note that these have to be fully adhered to, as applications which are not complete will not be accepted by the EULAR Secretariat.

A EULAR Jury will select the 2019 Stene Prize winner to be announced by 15 March 2019. The jury’s decision is incontestable. Information about the 2019 EULAR Jury will be posted in the coming months on www.eular.org

The Stene Prize winner will be invited to attend the Opening Plenary Session of the EULAR Congress in Madrid and is awarded a prize of € 1 000. EULAR provides the winner with travel to Madrid and hotel accommodation for up to 4 nights as well as with
an invitation to the EULAR Congress Gala Dinner. The second ranking essay will be awarded with € 700 and the third ranking essay with € 300.

Thank you so much in advance for supporting this exciting and important competition in your country. If we can help with any questions please do not hesitate to contact the EULAR secretariat. The 2019 Edgar Stene Prize Jury looks forward to receiving many
entries from all over Europe!

With kindest regards,

Nele Caeyers, Chair, EULAR Standing Committee of PARE
Dieter Wiek, Vice President, EULAR, representing PARE
Polina Pchelnikova, PARE Working Group Leader Edgar Stene Prize

Raquel Liaño from Spain who took part in our Patient Panel on Youth in May 2018 has written some good tips and tricks for a person newly diagnosed with SLE. We hope you find it useful.

Consejos para un recién diagnosticado

Cuando a mi me dijeron que tenía Lupus yo no tenía ni idea de lo que era y la explicación que me dieron fue técnica y no me saco de mucho. En mi familia y mi entorno nadie lo conocía, algunos habían oído hablar de ello pero nada más, mi apariencia era la de siempre así que nadie le daba mucha importancia. Al principio me daba un poco de miedo decirlo porque no solían saber lo que era y yo no sabía explicarlo, los tres primeros meses para mi son los peores, el primer mes tuve una fuerte reacción al sol, o sea que descubrí que era fotosensible, aun arrastro “secuelas” de ese brote, antes de esa reacción solo se me inflamaban los dedos y desde entonces se me inflaman y me duelen todas las articulaciones.

A continuación os daré algunos consejos que a mi me hubiesen gustado saber y otros que me parecen interesantes.

1. Es muy importante buscar un grupo de apoyo, en España en todas (o casi todas) las comunidades autónomas hay asociaciones de Lupus.
2. Siempre hay que protegerse del sol aunque nunca hayas tenido ninguna reacción, debes echarte protección solar y ser muy cuidadoso con él. Algunas personas también les afectan los fluorescentes.
3. Debes tener paciencia, tienes que ser consciente de que tu cuerpo algunos días no va aguantar el ritmo que llevabas antes, es muy importante descansar y saber decir que no cuando estés cansado, y no te apetezca hacer algo, tus amigos/familiares tienen que entender que tienes una enfermedad que absorbe tu energía.
4. Ignora todos los comentarios fuera de lugar, te dirán “tienes que tomar mas el sol que estas muy blanco”, “te ves muy bien”, “no te ves enfermo”, también te dirán cosas como “no te preocupes que no se quien lo tiene y esta muy bien”.Aparte de ignórales también debes acostumbrarte ya que es inevitable este tipo de comentarios.
5. Ten en cuenta que no hay dos lupus iguales es decir aunque tengamos la misma enfermedad no tenemos los mismos síntomas, tendremos algunos en común pero es probable que el transcurso de la enfermedad sea diferente. A cada persona le afecta de distinto modo.

Y por último aunque sea algo que se dé por hecho quiero recalcar que jamás te fíes de las curas milagrosas, en internet hay supuestos “médicos” con curas naturales, he conocido el caso de dos mujeres que murieron por abandonar sus tratamientos y comenzar con esas curas milagrosas, ambas acabaron con afecciones muy graves en sus riñones y cuando se les detecto fue demasiado tarde, por lo tanto nunca dejes tu tratamiento y sigue siempre las indicaciones de tu médico. No te dejes engañar en la actualidad el lupus no tiene cura pero si tratamientos que tratan de evitar la actividad de la enfermedad.

Considero que todo paciente debe saber o al menos tener en cuenta estas cosas, supongo que con el tiempo vaya añadiendo alguna mas.

You can follow Raquel here: https://www.facebook.com/El-lupus-y-Raquel-467282126977296/

LUPUS EUROPE was present once again at this year’s PARE conference, which was held from 16th-18th February in Brussels. PARE provides an opportunity to meet with other patient organisations who are members of the PARE network, to hear the latest updates on some of the programmes, to influence PARE’s priorities for the next year, and to build on some of our skills.
The conference was opened by Ms. Marianne Thijsen, the EU commissionaire for employment and Social affairs. She highlighted the commission’s progress on defining “European pillars of social rights”, 20 statements that should guide future EU Social policy. Three of those statements are particularly relevant as anchors to our work : (i) Everyone has the right to timely access to affordable, preventive and curative health care of quality; (ii) Access to safe work environment, fit for everyone; (iii) Right to inclusion for people with disabilities (including income support that ensures living in dignity, services that enable to participate in the labour market and in society, and a work environment adapted to their needs).

Another key statement that she made is that while some would like healthcare to be left entirely up to each country, she disagrees: “Arthritis does not know borders. Pain does not ask for your passport. There is a need to tackle health together: We can learn from each other, there should be no 2nd class citizens in Europe”. This is both the recognition of a threat, and a very nice statement on the need for EU health policy.

The conference then mostly evolved around the EULAR campaign “Don’t Delay, Connect Today”. If you are not yet familiar with this European wide campaign, see more on this link and offer your full support to this important initiative. Early diagnosis is a key priority, in Lupus and other RMD’s and can save a lot of personal hardship thanks to early treatment. The delegates very largely voted for a continuation of this campaign for at least another 2 years, so we can reach a maximum number of people.

Finally, a fun souvenir starring our chair, Jeanette Andersen who is reminding us of the importance of exercise.

LUPUS EUROPE is the organisation that brings 26 national lupus groups from all over Europe together.  To better include all countries in its activities and work, it is opening up a number of interesting volunteering opportunities for members of our national groups.

There is no need to be a Lupus Expert, all that is required is the desire to contribute, and a fair (not perfect!) command of English, as well as a good internet connection 😊

Participating in a work group is great fun, and serves a real need. It will typically mean about 6 “skype calls” per year, and some work at your pace in between. We are seeking a 2-year commitment to allow for some continuity. If your workgroup requires one-shot travel within Europe, it will be fully funded. Active participation in workgroups might open up the opportunity for more travel, meetings and discoveries…

So why don’t YOU apply?

We are seeking:

3 to 4 Members for the Communication Work Group to improve overall communication – making it smoother and more regular – increasing our social media presence and LUPUS EUROPE’s visibility. The deliverables include creation and ideas but also ongoing support, which can be shared but requires consistent and planned messages showing LUPUS EUROPE’s work. Platforms include FB, twitter, the blog, youtube…  There is also an opportunity to beef up our media presence for events such as World Lupus Day and at busier times such as around the convention. You like communication and have design or communication skills? Apply to join the COMMUNICATIONS Group.

3 to 4 members for the “Kick Lupus” Work Group to bring the Kick Lupus concept alive throughout the year by developing and rolling out initiatives that make people move, fight, kick, share and take the lead to push lupus further away. You want to help people with lupus feel better and more energised, and have creative ideas and the energy to implement them? Apply to join the KICK LUPUS Group.

3 to 4 members for the “Message tracks” Work Group to develop clear communication objectives and messages that will be offered for re-use by our members. What is our message to doctors? To newly diagnosed patients? To the general public? To politicians? Working together and using the methodology presented at the end of the Milan convention, we will seek to develop message tracks, and toolkits to make deployment easier. You have ideas on what our communication priorities should be and knowledge about lupus to bring arguments to support them? You would like to put thoughts in a structured and impactful format? Apply to join the “MESSAGE TRACKS” group.

5 to 7 members for the Patient Expert Group: This call is for people living with lupus that have already significant experience and understanding of the disease mechanism, who have been (or are ready to invest in being) trained as EULAR PRP, EUPATI, Eurordis or other similar training for patients supporting research. If you are interested in contributing through closer connections with the Research community, bringing the patients voice to the design, interpretation and on-going operation of research by industry academics, apply to join the PATIENT EXPERT GROUP.

Up to 10 YOUNG people with lupus for a one-shot YOUTH PANEL, to be held in May 2018. If you are aged between 18 to 28, this is a great opportunity to meet other people that live with lupus around Europe, while raising your voice so that we better understand what it really means to live with lupus as a young person today. The 2 days will be built around interactive sessions, designed to share views, concerns, aspirations, requests… It will be led by people who have lupus themselves. Interested? Apply for the YOUTH PANEL!

1 person with skills in video editing that could support our desire to be more active in this space, turning raw footage of short testimonies into attractive videos for web usage.

APPLY NOW by sending a message to secretariat@lupus-europe.org specifying which work group(s) you would like to join (giving a first and second choice), your name, address and phone number, a brief background on you and a few words explaining why you are interested. Applications will close by FEBRUARY 28 latest (earlier if great candidates are identified for all open positions).