I have SCLE Diagnosed in 2023

[Multiseed]

I never knew there is something like SCLE until I was diagnosed and things that one need to do in order to preserve ourselves. I am fairly new and need some guidance from my friends who have SCLE and are managing their problem better. I wish you all best of health and happiness ....

[Debbie_kinsey Administrator LUPUS UK]

Hi Multiseed

Welcome to the forum! You are not alone in SCLE being new to you - in a survey we did about 55% of people with lupus had never heard about it until they were diagnosed.

In case it’s of any use, we have a free information pack for new members, which includes information on lupus as well as Lupus UK as an organisation, how we work, and what we do. It's mainly about SLE, rather than SCLE, but has some general information. You can request it here: lupusuk.org.uk/request-info...

It can be quite overwhelming to learn all about the condition and work out what it might mean for you and your life as it can affect everyone so differently. Finding other people with lupus to chat to can be a great way to connect with people who might understand what you're going through and to share experiences. Alongside this forum, we have some ways you can do this through Lupus UK:

- We have regional peer support groups, who meet often meet monthly (either online or face-to-face) to chat, share experiences, and sometimes have talks from medical professionals. You can email our volunteer co-ordinator Michaella ([e-mail]) with the area you live in and she can tell you the nearest group to you.

- We also have Contacts, who are people with lupus who are happy for you to give them a ring to have a chat. They aren't medically trained, but are there to offer support and general guidance. If this is something you would be interested in, you can contact me or Michaella with roughly where you live and we can send you the details of your nearest Contacts.

- Our helpline is open Monday-Friday, 9am-5pm, and we're always happy to chat through things. 01708 731251

If you have any questions about lupus, its treatment, or living with lupus, I am always happy to help if I can. You can ask me a question here, or send me an email any time on [e-mail]

Take care,

Debbie

[Krazykat26]

Hi silver sis 🤗I was diagnosed with SCLE in Feb 2017. I had never heard of lupus. My doctor sent me a leaflet with info and an address/details for Lupus UK so I joined straight away.At the time I was very ill and was trapped in one room very high up. I used to spend time during many sleepless nights trying to say my diagnosis right..then how to spell it..then Hydroxychloroquine..again how to say it and how to spell it!! 😹

I wasn't on the internet until the end of 2017 but because I'd been in touch with lupus UK I knew about this forum so as soon as I got connected to the web I joined. I've learnt more about lupus on here than from any of my doctors and the support and encouragement is amazing. You're not alone Multiseed 💜🌈xx

[Multiseed in reply to Krazykat26]

Thank you for motivation

[MusicalFurbaby]

Hello and welcome Multiseed! We all do different things to help manage lupus, and it all depends on how lupus affects you. As you are probably learning, lupus can look wildly different from person to person. I find medication helpful for some (not all) of my symptoms; beyond that, I work part-time, try to pace myself and cut myself some slack where possible (a lifelong process), and do LOTS of self-care. I love music and writing, so I try to prioritise those things as they bring joy to my life. And joy is something we sorely need when dealing with lupus! Let us know if there are specific symptoms for which you would like suggestions or input, the community is here for you and always happy to help x

[Multiseed in reply to MusicalFurbaby]

Thank you for your response much appreciated. I hope you continue to enjoy your passion of music and writing stayblessed