Cardiff Lupus Support Group: Hi everyone, I'm very... - LUPUS UK

LUPUS UK

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Cardiff Lupus Support Group

Paul_Howard
Paul_HowardAdministrator

Hi everyone,

I'm very pleased to announce that thanks to the help and hard work of Dalila, the new Cardiff Lupus Support Group will be having its first meeting!

We are expecting Dr Julian Nash to be attending as a guest speaker and answering a few questions too.

The first meeting will take place on Saturday 30th March 2019 from 2pm – 4pm at;

Star Hub

16-18 Muirton Rd

Cardiff

CF24 2SJ

The meeting will take place in the Meeting Room on the 2nd Floor and staff at reception will help you find your way. The venue has disabled access and a lift. Light refreshments will be provided.

Anyone is welcome to attend. If you would like more information or want to RSVP, please contact Paul Howard directly by emailing paul@lupusuk.org.uk or phoning LUPUS UK National Office on 01708 731251.

20 Replies

Fantastic. Wishing the new Cardiff Lupus Group all the very best at their first meeting and for the future. Great news Paul, thank you for all you do for us as patients.

Paul_Howard
Paul_HowardAdministrator in reply to LupusKaren

Thanks LupusKaren. We'll certainly let everyone know how it goes. The thanks all goes to Delilah for this meeting. It couldn't have happened without her hard work finding a suitable venue.

All the very best to all concerned - LupusWales seems to be on a roll!

This is fantastic news!

Good luck Dalila!

I am sure your group will be a great success!

Best Wishes

Wendy

Many thanks to Dalila. Best wishes Kevin

Julian Nash is the best consultant I ever had for SLE. I was gutted when he left for Swansea. He is a great choice of speaker. Well done organisers!! Hope I can be there.

Paul_Howard
Paul_HowardAdministrator in reply to driven

We're thrilled that he is giving up some of his time to come and join the group, give a presentation and answer some questions. I hope to see you on Saturday :)

Hi Paul , hope you don’t mind me posting but I was literally going to put a post on the forum to see if anyone ever seen or heard of Julian Nash . I’ve got an appointment Monday and so anxious about it being a pointless trip from Somerset to Cardiff and feeling like I’ve wasted his time

My Gp wouldn’t refer me to Bath (you kindly recommended ) due to it being too far and Bath didn’t take private patients hence seeing Dr Nash. Thank you for reading and I wondered if you feel he will point me in right direction if he doesn’t feel It’s lupus ?

Thanks again

Paul_Howard
Paul_HowardAdministrator in reply to Tiggywoos

Hi Tiggywoos,

Yes, I know Dr Nash and I believe he was quite a popular consultant when he used to have his NHS clinic in Cardiff. Some of the past members of the group there were under his care. He does have experience with lupus, so I hope your appointment goes well and he can assist in your diagnostic journey.

Thank you Paul fingers crossed 🤞

Smckntsh3
Smckntsh3 in reply to Tiggywoos

Hi Tiggywoos

May I ask where are you seeing Dr Nash too please. Is this as a private patient & is it for a Lupus diagnosis.

Sorry for all the questions but I am on the same journey & live in Cardiff.

Thanks x

Tiggywoos
Tiggywoos in reply to Smckntsh3

Lovely to hear from you ! Ask as many questions as you like ... my story (prob like you yours) is very long . Paul told me about the Bath centre of excellence but my GP said it was too far away . So I literally googled consultants and Julian came up . My insurance company thankfully will pay .

I’m not even sure if I have lupus but NHS in Exeter said I did but then changed their minds 🙄. Very happy for you to private message .. I would you but I don’t know how to do it 😂.

Anything I can do to help please just ask xxxx

Tiggywoos
Tiggywoos in reply to Tiggywoos

Sorry ! It’s Spire Cardiff but he also practices in couple of other places I think

Smckntsh3
Smckntsh3 in reply to Tiggywoos

Thank you for the speedy response- that’s so helpful. Good luck with your appointment & will you keep us all posted how it goes.

Xx

Tiggywoos
Tiggywoos in reply to Smckntsh3

Thank you and I definitely will . So sorry to hear you are struggling ( saw your name in another post) . Take care xx

Smckntsh3
Smckntsh3 in reply to Tiggywoos

Sending gentle hugs to you x

I’m currently on meds for lupus & bechets - hydrochoquine & colchicine. But due to neg bloods no definite diagnosis even though I have all the symptoms.

Rheumotology not interested. GP says not qualified enough to diagnose.

So just stuck & getting worse x

Tiggywoos
Tiggywoos in reply to Smckntsh3

I’m same as you 😔..I wouldn’t have bothered going to another consultant but my husband says I must try to get help . Please do take care xx

Tiggywoos
Tiggywoos in reply to Smckntsh3

My GP asked me how to do a referral for Xray on knee 🙄.. you couldn’t make it up !

Smckntsh3
Smckntsh3 in reply to Tiggywoos

Oh geez 😳😳

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