Alone in Wales: Can anyone help me access Lupus... - LUPUS UK

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Alone in Wales

Aloneinwales profile image
8 Replies

Can anyone help me access Lupus support in South Wales ? I feel very isolated with my diagnosis after many tests scans and appointments over the past 12 months Some days I am so tired and in pain in all my muscles I cannot get out of bed to the toilet I have lost weight as eating makes me feel nauseous Yesterday my long awaited appointment with a Rheumatologist left me feeling dismissed told to come back in 6 months and even more blood tests Any recommendations would be most welcome I would willingly travel or pay to see someone privately if they offered an understanding of this condition

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Aloneinwales
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8 Replies
HazelW profile image
HazelW

Call Lupus UK Head Office - 01708731251 - the staff are very helpful & will put you in touch with someone.

Aloneinwales profile image
Aloneinwales in reply to HazelW

Thankyou for getting back to me I will call tomorrow

Kevin53 profile image
Kevin53

Follow Hazel’s advice and LUPUS UK will put you in touch with the local support group. Best wishes Kevin

Aloneinwales profile image
Aloneinwales in reply to Kevin53

Cheers for your support

Dalilatm profile image
Dalilatm

Hi, I’m sorry to hear that you’re feeling unwell at the moment. Lupus and symptoms can make us feel very isolated at times, and that no one understands what we’re going through.

I run the lupus support group in Cardiff,

Contact details: dewis.wales/ResourceDirecto...

And Wendy Diment runs the group in Pembrokeshire.

Contact details: dewis.wales/ResourceDirecto...

We both have regular online and in-person meetings.

Get in touch with us, it can be a tough condition but it doesn’t have to be lived in isolation. Here’s also Lupus UK’s contact details: lupusuk.org.uk/contact-us/

Dalila

Aloneinwales profile image
Aloneinwales in reply to Dalilatm

Thankyou for such a swift reply it really made my day better

Poshcards profile image
Poshcards

Hi, I am same, my local lupus group is either 1 1/2 hours away or in the middle of a huge city, so I have nobody either, but do have a wonderful consultant when I get to see her x

Walkinglondon profile image
Walkinglondon

Lupus UK website, very helpfull.

Lupus excellence centre in Bath or further afield Lupus Centre London Bridge Hospital (private). They are very good!

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