I attended my First Lupus AGM Meeting, Warrington, Liverpool!

[Lulabelle]

yesterday with my other half and found the whole day very helpful and enjoyable. I meet many people who came from as far as Cumbria to share the experience and to gather as much useful information as possible.

There were stalls available selling brick a brac to raise funds for Lupus Day/ Reasearch and many stalls offering free helpful advice with regards to Lupus, Sjorgrens syndrome, Arthritis and many more - as well as books at reduced prices and an array of helpful free literature to take home.

There were 3 expert speakers in the afternoon who also conducted a question and answer session.

1) Frist up was Dr Dipti Patel a Specialist Registar in Rheum at Warrington Hospital - and boy did she know her stuff! She was brilliant and explained Lupus, symptoms, treatments and different medications including possible side affects and more inportantly 3 new possible drugs which they are currently working on.

She answered my question in laymans terms - so I could understand and came away very possible about the future the first time in ages.

2) Was dr Winston De Mello who is a Consultant in Anaesthesia and Pain Medicient - he was very entertaining and had a cracking dry sense of houmour - again I found his talk very informative and thought provoking. With regards to any chronic condition comes pain - and there is NO pain killer that has yet been found that can cure pain - it's about pain management and positive mental attitude and how you can achieve that that provides you with the quality of life we all seek. He stressed the importance with regards to all pain killers as they all have side affects, that if you have tried something for a more and it doesn't provide you with the affect you want - then stop taking it! Also with regards to diets and health medications - nothing has been proven yet with regards to how this can or cannot help alleviate the symptoms of any chronic condition, including Lupus. But one should maintain a healthy eating plan/diet with plenty of low impact exercise, (walking etc) to help keep the body and mind healthy. However, he did state that Vitamin C, mutli vitamins and pro biotic drinks are the way forward. All the other supplements ie omega 3 and the rest - get naturally via foods. Everything that he said made very good sense.

3) the final speaker was Mr oliver Mawdsley from the DWP - who provided expert advice on claiming DLA, AA and CA and why Lupus is still not recognised with the benefits dept - and why people with chronic conditions are fighting to claim this benefit, going to tribunals and appeals etc. He advised that the new Universal Credit is coming into affect next year and some people already in reciept of DLA may have to have a face to face interview. It is not their role as an assessor to know about :Lupus, they only need to know how this affects YOU!. If you want further info about this - email me and I will be happy to go into further detail.

If you have not yet attended one of these meetings - please try to go to the next one - i found the whole experience of meeting people from all different backgrounds, with their own stories to tell about lupus, how they cope, their medications, diagnoses and how they keep positive when they are feeling 'crap' was so overwhelming.

I came home yesterday empowered and wanted to take on the world lol!

I look forward to the next one!

Thanks Lupus Uk for organising this event

Lulabelle x

[Paul_Howard Partner LUPUS UK]

Hi Lulabelle,

Thank you for sharing your experiences of the conference. It is always great to hear when somebody has benefited from something LUPUS UK has organised. All the credit for this meeting goes to our fantastic volunteers in the North West group.

[Jinny]

Hi Lulabelle

Thank you so much for this post here.

I too so much want to attend something like this in my area and keep in touch with my local support group for info and also here.I Am so pleased for you.x

[helentad]

Hi, thanks for posting this its great to read. I am new is and don't know how you get tickets for these events or on mailing lists. Can you please enlighten me.

Again thanks for posting very helpful.

Helen

[Lulabelle in reply to helentad]

Hi helentad,

When i joined lupus Uk they put me in touch with my locla lupus group - which is in the Northwest. they also send out newsletters which contain events etc. it was via this that i got the tickets. tickets costed £16.00 per couple which included Lunch and as much team coffee and buscuit's one could eat. your best posting a message to one of the volunteers to see which are you come under and they could contact them on your behalf.

Good Luck, lulablee x