by Nakita | May 10, 2025 | Blog
Fifteen years ago, my life took a turn I never could have predicted. Diagnosed with lupus, I found myself navigating an unpredictable and often painful journey. There were moments when I felt at a disadvantage, as though life had placed obstacles in my path that I...
by Debbie | May 6, 2025 | Latest News
A new report has been published evaluating lupus care in Wales, using information from people living with lupus and healthcare professionals. The report found some strengths of how care for lupus is delivered, and some areas which could be improved. The findings and...
by Nakita | Apr 9, 2025 | Latest News
The NHS Spring 2025 COVID-19 booster vaccination scheme is starting across England, Scotland, Wales and Northern Ireland. NHS staff has begun administering the first doses of the spring Covid-19 vaccine. NHS officials are urging those most at risk to secure their...
by Nakita | Apr 1, 2025 | Blog
In the past if someone were to ask me what my best feature was, I would without hesitation say my smile. People would always tell me that they “loved my smile”. I had a full set of pearly whites and was proud that my brightness could turn someone else’s frown upside...
by Nakita | Apr 1, 2025 | Latest News
We hope you will join us in extending a very warm welcome to our new Finance and Resource Manager, Lucy. Lucy joined us in January and brings over 20 years of experience working with charities. We are so pleased to have Lucy on the team! Read Lucy’s statement...
by Debbie | Mar 3, 2025 | Latest News
A research team from Cambridge University has found that having a psychosomatic misdiagnosis (a misdiagnosis of a condition where physical symptoms are caused or worsened by psychological factors) before getting an autoimmune diagnosis can have a long-term impact on a...
by Nakita | Nov 19, 2024 | Blog
While daily doom scrolling, the algorithm understanding my frustrated state pushed the account @thisthingtheycallrecovery to my screen. Listening to Jenny, an amazing graphic designer and poet (who happens to be chronically ill) as she shared her poem, I could’ve...
by Debbie | Nov 14, 2024 | Latest News
What does good care and treatment for rare diseases mean to you? The Rare Disease Quality Statement Project is asking the rare disease community to complete their survey, to develop a set of statements which clearly set out what high-quality, sustainable care,...
by Debbie | Nov 8, 2024 | Latest News
Chimeric Antigen Receptor T-cell therapy (CAR-T) has previously shown positive results in treating blood cancers. Based on how this treatment works, efforts have turned towards exploring their potential in treating autoimmune diseases like lupus. What is CAR-T cell...
by Nakita | Oct 24, 2024 | Blog
I knew something was wrong after ‘choosing’ to lay my head down on a rock in the sand on a freezing cold beach in Donegal, rather than attempt the planned walk with the rest of my family. When they woke me 4 hours later, I was confused, frozen and covered in HORSEFLY...
