If you need advice between your Rheumatologist appointments, remember that most hospital’s have a Rheumatology nurse. These are specialist nurses who are available to give advice most days by telephone, for subjects as diverse as: pain management, drug side effects and test results. This link to the Arthritis Research website explains what the Rheumatology Nurse does.

If you haven’t come across the Rheumatology Specialist nurse before, you may not be aware of how helpful and reassuring they can be. Most have a telephone service that you can call and leave a message on and they will then usually get back to you within 24 hours. St Thomas’ Lupus trust also have an online nurse who can advise you by email, although this can take a few days for a reply.

If the nurses aren’t able to answer your query themselves, they’ll check with a consultant first and get back to you.

Rheumatology Nurse Specialist contact numbers:

Royal Sussex County Hospital 01273 696955 X4354

St Thomas’ Lupus Trust online nurse Angie Barwick answers questions by email twice a week (everyone)

St Thomas’ Specialist Nurse 020 7188 3549 (for St Thomas’ patients)

We’re delighted to announce that our Facebook page is now up and running, so if you use Facebook please follow us to get the latest on what we’ve been up to, see new information on lupus and ideas for managing it. You can leave your own comments and questions. Also, if you happened to be logged on at the same time as each other you can also use it to have a live chat. So please make the most of and enjoy this new resource. Click on the Facebook links at the bottom of each of our website pages or this logo the left and it’ll take you straight there!

We had another very good coffee and chat with a great turnout. We were very pleased to welcome Diane to our group who was visiting Brighton from Liverpool and who wanted to meet us all. It was really interesting to hear her experience of treatment and support in a different part of the country and we hope she found our group warm and welcoming. We’ve agreed to stay in touch by email and look forward to seeing her again when she’s next visiting Brighton. Thank you also to Brenda, who very kindly made a donation to our group for World Lupus Day.

We had a great day at the Green Centre on Saturday the 10th May. A big thank you to everyone who brought along their aluminium cans and foil for recycling and to those who helped sort them at the event on Saturday. We managed to raise a total of £15 between us. Thank you to Mel too for organising this for the group and letting us use the Green Centre for our event.

Although it rained which meant we changed this day to an indoor event, we still had fun and the sun broke through by the afternoon. We were also very happy to welcome many of our newer members to our World Lupus day event.

There was a great spread of food, a chance to browse the group’s library of books about lupus and we also had a very interesting discussion about what worked for each of us when managing this condition.

Mel had a little quiz for us, testing us on our recycling knowledge and I think we all came away knowing a little bit more about recycling.

Thanks also goes to everyone who donated prizes to our tombola, which raised a further £21.60 on the day and provided a little bit of light entertainment!

In addition to the £36.60 raised on the day, we made a further £27 in donations to the group following this event. We’d like to thank Brenda for her donation to the group and Serena who despite being unable to attend due to her Open House worked very hard to raise money for the group.

A big thank you to Terri who came along early and helped Mel and I set up the room and also stayed to help tidy up at the end.

It was also great to have the chance to meet Oswalde, who has been so dedicated over the last few months in helping to sort the many thousands of collected plastic bottle tops. This has raised money for both Lupus Brighton and Hove and LupusUK.