Cardiff Lupus Group

23/07/2025

🌍 Today is World Sjögren’s Day! 💙🩵

Sjögren’s and lupus are both autoimmune diseases that can occur separately or together, sharing some overlapping symptoms.

Let’s raise awareness and show support for those living with these chronic illnesses! 💪

It’s Official! “Sjögren’s Syndrome” is now “Sjögren’s Disease”!
Just in time for World Sjögren’s Day, a major milestone has been reached: the name change has been formally published in Nature Reviews Rheumatology

Why it matters: This isn’t just a new name, it’s a powerful recognition of the seriousness of the disease and the lived experiences of millions worldwide.

The published manuscript can be found here: https://rdcu.be/exhjU

22/07/2025

Recruitment for the FLIP study has now reopened!

The trial is investigating whether an online fatigue management programme can help reduce the impact of fatigue in people with SLE. You can find out more, including how to take part, on our website: https://lupusuk.org.uk/2025/07/22/flip-study-recruiting-now/

We encourage you to complete the screening questions soon if you are interested in taking part, as recruitment will close once the research team's recruitment target has been met.

21/07/2025

20/07/2025

With warmer weather and stronger sun, it's important to take extra care, especially for those with Sjögren’s, where sunlight can trigger fatigue, flares, or rashes.

Did you know?
UVA rays pe*****te deeper into the skin and can contribute to long-term skin damage.
UVB rays affect the skin’s surface and are the main cause of sunburn.
Both can affect your immune system, making sun safety essential.

Tips to stay protected:
- Use a broad-spectrum SPF 30+ sunscreen
- Wear sunglasses to protect dry eyes
- Choose wide-brimmed hats and UV-protective clothing
- Stay in the shade during peak hours (10am–4pm)
- Stay hydrated to support energy and dryness

18/07/2025

18/07/2025

This World Sjögren’s Day, we want to celebrate YOU the daily wins, the quiet strength, the moments that matter.

What’s something you’re proud of today?
It doesn’t have to be big. It could be:
- getting out of bed on a hard day
- advocating for yourself at a doctor’s appointment
- supporting someone else
- making peace with rest
- finding a creative way to cope
- simply surviving, and thriving, in your own way

On July 23rd, and share a photo, whether that's of yourself, with your loved ones or a pet, and a sentence about what makes you proud. Use the hashtag:


Tag us so we can share your stories or posts and celebrate together.

17/07/2025

Great news! 👏🏻👏🏻

13/07/2025

Arthritis Ireland Helpline volunteer Anna O'Laoghaire and Senior Occupational Therapist Jane Brownlee  Peter Boyd meets Arthritis Ireland Helpline volunteer Anna O’Laoghaire and Senior Occupational Therapist Jane Brownlee to discuss ways in which those with a chronic condition can navigat...

13/07/2025

10/07/2025

⏰ Starting in a couple of hours! 💻

Thursday 10 July
12:00-13:00 BST
Free registration to informative session with Prof B Hunt & Dr G Lowe, who will be discussing and taking questions on:
'Women and blood clots, managing heavy menstrual bleeding in women prescribed anticoagulation.'

Read full details: https://thrombosisuk.org/patient-information/support-meetings/

30/06/2025

Michelle, a law lecturer from Luton, was the first person in the UK to join a large international trial into a new treatment for lupus.

She was diagnosed with lupus in her 20s, after being referred to a rheumatologist for wrist pain. Over the years, she has experienced symptoms of overwhelming fatigue, debilitating pain, and recurrent mouth ulcers.

Lupus is a long-term autoimmune condition that causes joint pain, skin rashes and tiredness, as the immune system attacks healthy parts of the body.

👩🏿 Approximately 90% of people with lupus are women. People from Black African, Caribbean and Asian ethnic groups are also at a disproportionate risk of the disease.

In severe cases of lupus, inflammation can cause severe damage to the heart, lungs, brain or kidneys, which can be life-threatening. There's currently no cure, but symptoms can improve if treatment starts early.

It was the prospect of helping to find new and better treatments that led Michelle to take part in research earlier this year.

💬 She said: “As a Black woman, I felt that it was important to get involved. We’re all different and how we respond to treatments can vary from person to person. That’s why I think it's really important that people from different ethnic groups are represented in research.”

Now she is encouraging others to take part in studies too by signing up to . Find out how you can get involved and read Michelle's story by clicking the link in the comment below! 👇

26/06/2025