Throughout my life I’ve always preferred heat over the cold. When I describe myself as a cold person, I’m speaking of my temperature gauge, not my personality (hopefully)! As pretty as the Northern lights appear to be, I’ve never understood the draw to the freezing temperatures of Iceland, pre-diagnosis, you could only catch me on the beach or by a radiator. I would always joke that I had circulation issues when people would ask why I’d constantly complain that I was cold, but I had no clue that it was actually true. My introduction to Raynaud’s disease was reading through the letter from my r ..read more

The LUPUS UK National Office will be closed for an extended period from 12.30pm on Thursday, 21st December 2023 until Tuesday, 4th January 2024.  We’d like to take this opportunity to say a massive THANK YOU to: – All our wonderful volunteers – Everyone that ran, cycled, walked, jumped out of planes, baked or did anything else to help raise vital funds for the charity. – All the generous people who donated funds allowing us to continue our work, to fund lupus research and specialist nurses around the UK. – Anyone who helped raise awareness of lupus by displaying a poster, handing out ..read more

I am happy to share that I have completed the 25km summer ultra challenge in recognition of the contributions raised to support LUPUS UK. My daughter Allison fell very ill in late March, and through most of April she was hospitalised with an eventual diagnosis of Systemic Lupus Erythematosus (SLE). Lupus is an autoimmune disease with no cure and can potentially cause significant damage to the organs – kidneys, joints, lungs, etc. In Allison’s case, there was some damage to her kidneys – thankfully, without permanent impairment – but the kidneys remain damaged today, as a reminder of the danger ..read more

Melissa Chieza, 25, is a qualified Occupational Therapist (OT), but working as a mental health Practitioner in GP surgeries in East of England. Morning Normally, my alarm is set for 6am, but most days I snooze it till 07.00am. This can very  much depend on how my fatigue levels are that day and some days I may need a bit more time to orientate myself to the world. Before I head downstairs, I will check my blood glucose via a quick finger prick to see if it accurate against my Dexcom G6.  I head downstairs and make a cup of coffee and I may sit at the dining table and complete my grat ..read more

On the 7th of October LUPUS UK held an event in celebration of Black History Month (BHM).  Alongside two consultant rheumatologists, they had guest speakers from the Caribbean and African Health Network (CAHN) who spoke about the importance of using Black History Month as an opportunity to discuss health issues within ethnic communities. I sat there discussing the experiences I had faced as a black woman needing medical assistance feeling tears leave my eyes as my experiences were echoed back, with the rheumatologist and other attendees acknowledging that I wasn’t alone in those chal ..read more

The 30th of July was International Friendship Day and our social media feeds were full of reels and memes of besties, bike riding, holidaying, dining and living their best lives. On days like this, you (the luppie, the spoonie, the chronically ill) have a couple of options. You can either doom scroll – living vicariously – through the probably staged, five takes videos, or put the phone down and rewatch episodes of fake friends instead. Many people who have a long-term illness struggle maintaining friendships and gaining the understanding and support they need from those they consider the most ..read more

I absolutely love travelling. Last year alone I took more than 30 flights and I’ve tried extremely hard not to let lupus stop me from doing what I love. However, I must admit it has been awfully difficult and demotivating at times, and I’ve questioned whether it was worth it when I kept feeling drained after each trip. I got to a point where I considered stopping completely, and comments like “just stay at home” or “surely lupus isn’t that bad if you are jetting off every so often” really took a toll on my outlook of travelling. I decided I wasn’t going to let lupus win and since then I have l ..read more

 Alton Brown My name is Alton Brown, and I am a proud LUPUS UK Ambassador, which excitingly for me, means I get to use my platform to support awareness raising of lupus as a chronic autoimmune disease, as well as support profile raising of the incredible work carried out by LUPUS UK. As we come into Men’s Health Week 2023, this is a great opportunity to share a bit about my journey in the context of a day in the life of me and my occupation(s) and managing lupus, whilst speaking to the importance of men taking stock of their overall health, accessing the information, services and treatmen ..read more

Ricky Chotai (LUPUS UK Trustee) I am Ricky. I am 35 years old, and I’m a Lupus fighter. At the age of twenty-five, I was diagnosed with lupus. It changed my life. But what is even more remarkable is that my mother faced the same battle in her mid-twenties. For the past year, I have had the incredible opportunity to volunteer for the Board of Trustees at LUPUS UK. But my journey started five years ago when I joined a Lupus Research Study as a patient collaborator. Volunteering allows me to be part of the solution. It gives me the chance to make a real difference in the lives of people going thr ..read more

Hello, my name is Louise, I am a registered Physiotherapist and I have SLE. I’ve been asked to write a piece for LUPUS UK’s website to give my perspective both as a fellow lupus patient and a healthcare professional and why I believe there are 3 main things we can focus on to help to manage our condition. I call these the 3 M’s: Medication, Movement and Mindfulness. As a physio, my background was working with people with chronic lung conditions who needed long-term oxygen therapy at home. I, therefore, had a lot of experience of working with people with chronic health conditions long before I ..read more