Welcome back to our blog series on National Member News!

We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Ingrid Hennes from CIB Liga who talked to us about the wonderful work the organisation is doing, the needs of lupus patients in Belgium,  sex and rheumatic diseases, COVID19 and so much more!

 

 

 

 

 

 

 

 

 

 

Photo of Ingrid Hennes – CIB Liga      Photo of Board Members – CIB Liga                     Photo of Meeting – CIB Liga 

 

How do you keep in touch with or have contact with your members?

 

We keep in touch with our members in many ways. We have Facebook, we have our magazine which we make ourselves. For our magazine we collect all the news, from Lupus Europe, from FESCA et cetera – from lots of places with relevant information and we put it together. It’s a postal magazine, so we send it by post. We asked our members and found that 80% of them would prefer to read it via post and not as an electronic version, so we send it by post every 3 months. We also have a website and we regularly send mailings to ask some things or show some things we think are important. So we have lots of different ways of keeping in touch with our members.

 

Did you have any special meetings or webinars during the past year (World Lupus Day, Rare Disease Day, Annual General Meeting etc)?

 

Yes, we had very regular webinars this past year! We had webinars about patients’ rights, about financial issues related to patients, what rights people have, immunology for dummies, webinars on vaccinations and a lot more! There was a webinar at least every 2 months.  

 

We also had some board meetings virtually, but we were also very happy to meet each other again in-person!

 

Has it been difficult to keep connected with your members during the Covid19 pandemic?

 

Yes, because most of our members are elderly women and I’m not sure they are as much familiar with digital meetings. We think that they passed it, they didn’t get in touch. So we decided to summarise the webinars, make a report about them and put it in the magazine so people who couldn’t attend could read about them!

 

Now we’re looking for a solution to enable people to follow, we’re thinking about buying a little gizmo to stream meetings. So if people are having a bad day and can’t attend meetings or webinars/lectures, they can stay at home and look at their computer and join that way.. Our treasurer is trying to get in touch with Annemarie to see about funding for it. We’ve tried it with a loan camera and it worked so we think we want to buy the camera. This is for ALL members, not just the board.

 

Have there been any circumstances during the pandemic that changed the way of living with lupus?

 

In 2020 it was a bit difficult to get in touch with rheumatologists, because everyone had clinics on hold due to the pandemic. Then it changed but because we are patients who mostly need medication and not surgery it’s ok. People are now able to see the doctor again, sometimes with a bit of delay, but it’s ok in general.

 

Has Digital Health improved or changed in your country?

 

We didn’t used to have any digital consult, but they are happening now. I still hope I will see my doctor in person, but I’m not sure. I can’t imagine an e-consult for lupus is good enough for all meetings, because does a dermatologist or rheumatologist not need to see the patient or feel a rash? Does speaking on the phone replace that? You can’t do that with new patients. Maybe with patients who know what they have and how their body works. But not new patients or unstable patients.

 

We do have electronic prescriptions. We just have to get in touch with the pharmacist, they read the patient ID and the prescription is all there – it’s a very easy process. In Belgium we have a home pharmacist, that is a person’s chosen pharmacist. They get some funding to compensate for this and their job is to keep track of a person’s medication regimen – they keep an eye on interactions or potential problems with medications. We have the same with our General Practitioners (GPs) – it’s also a person’s chosen doctor who keeps track of their medical dossier; that doctor knows what specialists a person is seeing, what tests they need to have, what immunisations. They get compensation for that too. If someone isn’t satisfied with the care they get they can always change doctor.  

 

What would you most need as support in your country for lupus?

 

I believe in Belgium we are well off. When I see colleagues from other countries, especially from the East where they don’t get medication as much or where medication is very expensive for patients…. In the start of the pandemic there was a bit of trouble getting plaquenil, but we didn’t have many problems with good pharmacists who safeguarded the supply for lupus patients.

 

I think we do need more awareness of lupus though. When people go to their GP with symptoms and their GP starts treatment for something completely different because they don’t know the signs of lupus, that’s very difficult. For as long as I’ve been chairman of CIB Liga the situation hasn’t changed; the time between when the first symptoms appear and diagnosis is still quite long. Some people are lucky and get a diagnosis after just one year, that’s not very long for a lupus patient. I had to wait 7 years, I felt like a hypochondriac, like I was complaining for nothing. It’s incredible that this kind of delay can still happen on this day and age.

 

Is there anything you think Lupus Europe could help your organisation with?  

 

Yes!! We’ve submitted an application to the Capacity Building Programme on some assistance with our streaming programme! 

(Lupus Europe has since been in touch about this!)

 

We have a good contact with Lupus Europe with Alain (General Secretary), with Annemarie (Board of Directors Member -Secretary). When there is something we can talk about, we do and as I said we here in Belgium are not so bad compared to some other countries in terms of doctors, medicines, access to treatment.

 

Is there any topic/theme/area that you think Lupus Europe should focus on, on something where European collaboration would make sense?

 

There is Rheumanet in Belgium. We are at the moment working on: let’s talk about sex. Because people with rheumatic diseases, not only lupus but lupus too, have complaints and trouble and pain and how to have sex and feel their partner doesn’t understand these issues. We thought we have to work on it, so we are doing it now.

 

It’s painful to hear what people go through because their partner doesn’t understand and sometimes wants to have sex no matter what, or that people are separating because of these issues, there’s also issues around wanting to have children that come into this. But also practical issues like how can we make sex less painful for people with lupus?

 

We want this programme to grow and get better and better. This is a big issue for a lot of people with lupus and it does need to be addressed more. We don’t know yet if there’s something out there that might be quite practical, for example about what positions may be best for people with joint pain et cetera. Sometimes people make fun of this and they say oh we’re not going to discuss the kama sutra, but why not! If people find less painful ways of having sex, then it’s all worth it.

 

Are you aware of the Lupus Europe Member Capacity Building Program?

 

Yes! We know that you make it possible for Lupus Europe members to get some help with funding things like programmes or other things.  

 

Could you tell us a bit about a dream you have as a group?

 

To get young people involved! I have every respect for them, we need some youth! The Board, the people we see the most are older! We really dream of young people amongst us because their drive is different, they have a different energy about them and their issues are different.

 

I respect that they sometimes want to forget about the disease, that they want to live life and have their children, career, household, vacations, or whatever else they may have been dreaming of when they thought of what their life was going to be like; I respect that. But we do want to have young people with us to learn from them and see what their needs are. Let’s talk about sex is one of their needs, but there are other things that are relevant to young people and we need to know about them! It can be very difficult to get interested in the disease and in patient organisations when people are very young.  

 

 

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2 days ago
LUPUS EUROPE

#lupus is a #raredisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #raredisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

rarediseases.org/
... See MoreSee Less

#Lupus is a #RareDisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #RareDisease in #Europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website 

https://rarediseases.org/
2 days ago
LUPUS EUROPE

Today is rare disease day!

🚨 There are over 300 million people who live with a #raredisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #RAREDISEASES:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations Rare Disease Daye DayEURORDIS-Rare Diseases Europeurope, we will carry on working towards an early diagnosis, access to treatment and equality for #raredisease patients 🙌.

Thank you for your support on this #RareDiseaseDay!

#rarediseaseday2024 #ShareYourColours
... See MoreSee Less

Today is rare disease day!

🚨 There are over 300 million people who live with a #RareDisease in #Europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #RareDiseases: 

1️⃣ There are more than 6000 identified rare diseases.

2️⃣  Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them. 
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop. 
The most serious complication of neonatal lupus is a heart condition known as congenital heart block. 

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life. 

Along with organisations Rare Disease Daye DayEURORDIS-Rare Diseases Europeurope, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌.

Thank you for your support on this #RareDiseaseDay! 

#rarediseaseday2024  #ShareYourColoursImage attachmentImage attachment+2Image attachment
3 days ago
LUPUS EUROPE

🌟 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲 𝗠𝗮𝘁𝘁𝗲𝗿𝘀: 𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗥𝗮𝗿𝗘𝗥𝗡 𝗣𝗮𝘁𝗵 #𝗟𝘂𝗽𝘂𝘀 𝗦𝘂𝗿𝘃𝗲𝘆 🌟

🦋 Each journey with lupus is unique, yet there are shared paths: the initial confusion at the first symptoms, the quest for a diagnosis... But we know every lupuERN RECONNETs the power to initiate change.

🤝 ERN RECONNET and Lupus Europe have collaborated on the RarERN Path #lupus project, aimed at capturing and understanding the patient experiences across Europe.

Your story is crucial to reshape and enhance the care and attention we, as lupus patients, receive.

📢 𝗪𝗲 𝗡𝗲𝗲𝗱 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲❗

If you're living with lupus 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲, your participation is invaluable.

By sharing your patient pathway, you can contribute to a larger effort to understand how people experience the condition, their pathways and ultimately, to try and improve healthcare services.

🔗 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝗶𝗻 𝟭𝟰 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲𝘀:

🇩🇰Danish: bit.ly/SLEStories_Danish
🇳🇱Dutch: bit.ly/SLEStories_Dutch2
🇬🇧English: buff.ly/3uExnRz
🇫🇮Finnish: bit.ly/SLEStories_Finnish
🇬🇷Greek: bit.ly/SLEStories_Greek
🇮🇸Icelandic: bit.ly/SLEStories_Icelandic
🇮🇹Italian: bit.ly/SLEStories_Italian
🇱🇹Lithuanian: bit.ly/SLEStories_Lithuanian
🇵🇱Polish: bit.ly/SLEStories_Polish
🇵🇹 Portuguese: bit.ly/SLEStories_Portuguese
🇪🇸Spanish: bit.ly/SLEStories_Spanish
🇸🇰Slovak: bit.ly/SLEStories_Slovak
🇫🇷French: buff.ly/3IfuJVf
🇩🇪German: buff.ly/3IfHf7e

Your story can lead to significant shifts in lupus care. Let's come together to make a difference. Your experience, your opinion, your struggles, and your triumphs can help shape a better future for all lupus patients across Europe.

𝗧𝗵𝗲 𝗱𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗶𝘀 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄❗
... See MoreSee Less

🌟 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲 𝗠𝗮𝘁𝘁𝗲𝗿𝘀: 𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗥𝗮𝗿𝗘𝗥𝗡 𝗣𝗮𝘁𝗵 #𝗟𝘂𝗽𝘂𝘀 𝗦𝘂𝗿𝘃𝗲𝘆 🌟

🦋 Each journey with lupus is unique, yet there are shared paths: the initial confusion at the first symptoms, the quest for a diagnosis...  But we know every lupuERN RECONNETs the power to initiate change.

🤝 ERN RECONNET and Lupus Europe have collaborated on the RarERN Path #Lupus project, aimed at capturing and understanding the patient experiences across Europe.

Your story is crucial to reshape and enhance the care and attention we, as lupus patients, receive.

📢 𝗪𝗲 𝗡𝗲𝗲𝗱 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲❗

If youre living with lupus 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲, your participation is invaluable.

By sharing your patient pathway, you can contribute to a larger effort to understand how people experience the condition, their pathways and ultimately, to try and  improve healthcare services.

🔗 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝗶𝗻 𝟭𝟰 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲𝘀:

🇩🇰Danish: https://bit.ly/SLEStories_Danish 
🇳🇱Dutch: https://bit.ly/SLEStories_Dutch2 
🇬🇧English: https://buff.ly/3uExnRz 
🇫🇮Finnish: https://bit.ly/SLEStories_Finnish 
🇬🇷Greek: https://bit.ly/SLEStories_Greek
🇮🇸Icelandic: https://bit.ly/SLEStories_Icelandic
🇮🇹Italian: https://bit.ly/SLEStories_Italian
🇱🇹Lithuanian: https://bit.ly/SLEStories_Lithuanian
🇵🇱Polish: https://bit.ly/SLEStories_Polish
🇵🇹 Portuguese: https://bit.ly/SLEStories_Portuguese
🇪🇸Spanish: https://bit.ly/SLEStories_Spanish
🇸🇰Slovak: https://bit.ly/SLEStories_Slovak
🇫🇷French: https://buff.ly/3IfuJVf 
🇩🇪German: https://buff.ly/3IfHf7e 

Your story can lead to significant shifts in lupus care. Lets come together to make a difference. Your experience, your opinion, your struggles, and your triumphs can help shape a better future for all lupus patients across Europe. 

𝗧𝗵𝗲 𝗱𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗶𝘀 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄❗
3 days ago
LUPUS EUROPE

🚨 Tomorrow is #RareDiseaseDay!

🙌 Let's show our support to all those organisations that, like us, work every day to improve patients' quality of life.

🔊 Share the officiRare Disease DayDay campaign video and help us raise awareness of the importance of an early diagnosis, equitable opportunities and access to healthcare.

#ShareYourColours

buff.ly/49NLliU
... See MoreSee Less

🚨 Tomorrow is #RareDiseaseDay!

🙌 Lets show our support to all those organisations that, like us, work every day to improve patients quality of life. 

🔊 Share the officiRare Disease DayDay campaign video and help us raise awareness of the importance of an early diagnosis, equitable opportunities and access to healthcare.

#ShareYourColours 

https://buff.ly/49NLliU
LUPUS EUROPE Uniting people with Lupus throughout Europe
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