Question for Paul_Howard - how did you get this gig?

[quirkytizzy]

Here's hoping this isn't too personal!

I was reading your post about you getting married (to which, DUDE, CONGRATULATIONS!) and I was wondering how it was that you got to be the main moderator here at Lupus UK. You're exceedingly well-informed, compassionate, and hard working. (Moderating a forum this size has got to be a handful!)

How did you come to be the head honcho here, specifically in the Lupus forms? What is your favorite part of moderating here? What is the most frustrating thing about modding here on the Lupus boards? What's your experience/background with Lupus (or other autoimmune disorders)?

I hope these questions aren't invasive or anything. (I don't mean to sound as if I'm interrogating you!) You do a bang up job around here and I was curious. We are lucky to have you in our corner!

[Paul_Howard Partner LUPUS UK]

Hi quirkytizzy ,

Thank you so much for the congratulations - my wife and I are extremely happy and have had a lovely first Christmas as husband and wife. I'm very happy to give you a bit of background about how I became involved with LUPUS UK and my work here in this community.

I initially became involved with the charity LUPUS UK after my friend Heather died due to a rare, uncontrollable flare of the disease in 2008. I started fundraising for the charity by taking part in sponsored runs - I still do this and in fact I am doing 10 half marathons this year in her memory justgiving.com/fundraising/...

When I graduated from university I wrote to Chris Maker (LUPUS UK CEO) to see whether they had any possible job openings. In spring 2011 I started volunteering for the charity on a part time basis, using my skills to help raise the online profile of the charity. This largely revolved around establishing social media accounts, managing the website and pioneering this HealthUnlocked community in July 2011. I was offered a full-time, staff role with LUPUS UK in October 2011 and have been here ever since. I'm lucky to now have excellent help from Chanpreet_Walia in administering this community.

My favourite thing about administering this community is seeing how beneficial it can be for many people. We are extremely lucky and have some really well informed and supportive people who regularly contribute here and help guide and listen to people who are in need. Many people with lupus do not know someone else with the disease when they are diagnosed, so having an opportunity to talk with people who understand is very valuable.

I don't really get frustrated by any aspects of moderating this community - I really enjoy my work here. There are some things that are more challenging than others though and one of the more challenging parts is trying to ensure that any information/advice shared here is evidence-based (or it is clear if it is not) and making sure people discuss any important health decisions with their healthcare team.

[Barnclown in reply to Paul_Howard]

Thanks so much for telling us your story paul! It’s wonderful! I am so glad you turned up at LUK when you did...that was exactly when i needed this sort of online forum most because i was mainly housebound, had just learned i’d been living with unrecognised systemic lupus all my life...at that point i’ was in my mid 50s, and had never even heard of immune dysfunction & connective tissue disorders, let alone lupus! So i was feeling bewildered and anxious about the whole diagnosis & treatment process. It was you and Shelagh Cheesman, the wonderful head of our Cambridge LUK group, plus our Lupus Specialist Nurse Jane Hollis, who i guess helped me most to get my bearings from the beginning all those years ago. you 3 have always been my Guiding 🌟🌟🌟s...alongside everyone here on forum.

I v quickly discovered this forum is MILES better than any other online lupus forum i’ve found (seems to me there is hardly ever any non-evidence based info & advice shared here + we all emphasise it’s vital to discuss our issues with our medics: credit is due to you for this, i feel...you set the Right Example)

your work developing this forum has made a HUGE positive difference to my life, and i know many here feel this way too. It’s great chanpreet is working alongside you now. Many thanks to you both, and the rest of LUK, for everything!

😘🍀😘🍀😘🍀 coco

[Barnclown]

Just want to give you a BIG thank you, quirkytiizzy: because your post has resulted in THE most wonderful reply from Paul giving us the story of his work with LUK. I TOTALLY agree with you: we are VVVVVV lucky to have 🌟s like Paul in our corner 👏👏👏👏👏👏👏👏👏

😘🍀😘🍀😘🍀 coco