Here is our second ‘Trustee story’, this time from Katharine. 

1149149_10201963731800476_248080961_o

When I was first diagnosed, I didn’t even know that there was a patient association in my country, let alone a European umbrella organisation working towards common goals on behalf of other European associations.

I haven’t been able to work for a few years due to different auto-immune diagnoses, one of which is lupus, but, now that I am being better followed up and have a better medication regime, I realise I can do a little to help out.

When I learned that LUPUS EUROPE were looking for nominations to be a trustee, I was interested but absolutely terrified of not being able to do the job. Unlike some people within LUPUS EUROPE, I don’t have experience of running a national patient association and I also hadn’t used my work skills for a few years so felt rusty and lacking in confidence.

In the years prior to applying to becoming a trustee, I had been helping out by attending certain important events, representing LUPUS EUROPE at EPF & IAPO. I realised when attending these events that I would do a far better job if I were more closely involved in what was going on within LUPUS EUROPE.

That realisation is what eventually decided me and, with assurance that I wasn’t applying for a specific role – I felt so unsure of what I would be able to do – I decided to take the plunge and put my name down.

It is obviously an important commitment but it is also a very flexible one. Every trustee does what they are able to do and the whole team works together to best harness the skills each person may have.

Our conference calls and face-to-face meetings are busy and animated. We are all very much encouraged to give our opinion. We don’t always agree but work together to find the best way forward. The amazing thing about being involved in any LUPUS EUROPE and patient advocate activity is the ‘energy’ in the room. People may expect a room full of sick people to be a dull place but nothing could be further from the truth. Of course, as a lupus patient, I get tired, but that energy truly makes me feel alive!

I have found this challenge to be very rewarding personally. I am able to bring unused skills back up to date and have discovered more about how I can develop as a person and what I’m really good at. I work with a wonderful and dynamic team and have met many other like-minded people through events I attend on behalf of LUPUS EUROPE.

And the best thing… I’m helping move things forwards for lupus patients across Europe.

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
1 week ago

🌍 Tomorrow #eular2024 kicks off!

Lupus Europe plays a significant role in this year's Congress, with a diverse range of exciting topics and great participation.

🦋 We will be sharing insights from most of the lupus sessions on X, so don't forget to follow us!

😃 Stay tuned!
... See MoreSee Less

1 week ago

🤩 EULAR Congress is around the corner!

✅ At Lupus Europe, everything is ready to make the most of one of the year's top events, and our Board & some of our PAN members will cover all the #lupus sessions 🦋.

If you are attending #EULAR2024, don't forget to visit our booth!
... See MoreSee Less

🤩 EULAR Congress is around the corner!

✅ At Lupus Europe, everything is ready to make the most of one of the years top events, and our Board & some of our PAN members will cover all the #lupus sessions 🦋.

If you are attending #EULAR2024, dont forget to visit our booth!

3 CommentsComment on Facebook

Great

Indeed natural medication is really the best. All thanks to doctor lolo for his herbal medicine he sent for me. I was having Endometriosis, Fibromyalgia, Rheumatoid arthritis for years now. But with his herbal medicine, I am totally free from these illness. You can also contact him today and be free from yours www.facebook.com/102267315741479

2 weeks ago

😃 Yes! The theme for this month is UV light, which is known to have a direct association with lupus.

☀️ Throughout June, we'll be sharing helpful information to understand the importance of avoiding UV exposure if you have lupus.

🔊 Join us and share how you #kicklupus!
... See MoreSee Less

😃 Yes! The theme for this month is UV light, which is known to have a direct association with lupus.

☀️ Throughout June, well be sharing helpful information to understand the importance of avoiding UV exposure if you have lupus.

🔊 Join us and share how you #KickLupus!
2 weeks ago

🌞 Welcome June!

🦵🐺 As we approach Summer, we will #kicklupus this month by discussing a crucial topic for everyone affected by lupus.

🤔 Can you guess?

🔊 Stay tuned as we unveil the topic and share some important insights!
... See MoreSee Less

🌞 Welcome June!

🦵🐺 As we approach Summer, we will #KickLupus this month by discussing a crucial topic for everyone affected by lupus.

🤔 Can you guess?

🔊 Stay tuned as we unveil the topic and share some important insights!

7 CommentsComment on Facebook

Of course sun protection

Thank you so much for the big work you do every day for LUPUS EUROPE! Let's kick LUPUS all together!

Sun protection ☀️🕶🏖⛱️☂️

View more comments

LUPUS EUROPE Uniting people with Lupus throughout Europe
Send