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Urticarial vasculitis
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North/East Yorkshire Vasculitis Support Group
Hi everyone, We're holding the next North/East Yorkshire Vasculitis Support Group meeting on Sunday the 9th of August 2015 between 2:00pm and 5:00pm. The meeting will again take place at Wydale Hall retreat and conference centre, just 10 miles to the west of Scarborough The meeting will include afternoon
Hi everyone, We're holding the next North/East Yorkshire Vasculitis Support Group meeting on Sunday the 9th of August 2015 between 2:00pm and 5:00pm. The meeting will again take place at Wydale Hall retreat and conference centre, just 10 miles to the west of Scarborough The meeting will include afternoon
RichardE
Volunteer
in
Vasculitis UK
9 years ago
My 10 year old and cerebral vasculitis
Hi I'm new to this site wondered if anyone could help me. My daughter had a stroke last year she was 9years old, after 9months they diagnosed her with cerebral vasculitis, she's 10 now they also diagnosed her with ADHAD when she had her stroke, she isn't your typical vasculitis suffer having none of
Hi I'm new to this site wondered if anyone could help me. My daughter had a stroke last year she was 9years old, after 9months they diagnosed her with cerebral vasculitis, she's 10 now they also diagnosed her with ADHAD when she had her stroke, she isn't your typical vasculitis suffer having none of
Shelley46
in
Vasculitis UK
9 years ago
The Leicester Mercury tells Martin's story, being diagnosed with Vasculitis (Wegener's Granulomatosis) GPA
The Leicester Mercury tells Martin's personal story , being diagnosed with vasculitis Wegeners Granulomatosis . John Mills explains about Vasculitis UK the charity giving one to one support,sharing information, supporting #research and raising awareness
The Leicester Mercury tells Martin's personal story , being diagnosed with vasculitis Wegeners Granulomatosis . John Mills explains about Vasculitis UK the charity giving one to one support,sharing information, supporting #research and raising awareness
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
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Hi I'm a carer for my wife who has recently been diagnosed with c-ANCA positive vasculitis.
Are there any other carers out there who can give me any tips. Thanks.
Are there any other carers out there who can give me any tips. Thanks.
Manjosef
in
Vasculitis UK
9 years ago
Just curious.........
My husband has GPA (Wegener's) and it's coming under control with Rituximab, but he's had to have loads of operations to deal with symptoms that have arrived. He's had his Ulnar nerve moved (Cubital Tunnel), a Nerve on toe cut back, Squamous Carcenoma on his head, Triple Heart Bypass, Varicose Veins,
My husband has GPA (Wegener's) and it's coming under control with Rituximab, but he's had to have loads of operations to deal with symptoms that have arrived. He's had his Ulnar nerve moved (Cubital Tunnel), a Nerve on toe cut back, Squamous Carcenoma on his head, Triple Heart Bypass, Varicose Veins,
Nadine99
in
Vasculitis UK
9 years ago
New Blood Test to Identify Viruses
Just seen this article about identifying every virus that a person has had in their life. Seems to me that it would be useful information to have in investigating possible triggers for vasculitis. As the test is relatively cheap I was also wondering whether VUK might consider funding it for the likes
Just seen this article about identifying every virus that a person has had in their life. Seems to me that it would be useful information to have in investigating possible triggers for vasculitis. As the test is relatively cheap I was also wondering whether VUK might consider funding it for the likes
RichardE
Volunteer
in
Vasculitis UK
9 years ago
Could you have Vasculitis? It’s tough to diagnose and comes with a host of nasty symptoms – but just what is Vasculitis?
Interesting article published today by BT.com Home page for the end of Vasculitis Awareness Month also input from John Mills Chairman of Vasculitis UK who also happens to have Wegener's Granulomatosis http://home.bt.com/lifestyle/wellbeing/could-you-have-vasculitis-11363983660870
Interesting article published today by BT.com Home page for the end of Vasculitis Awareness Month also input from John Mills Chairman of Vasculitis UK who also happens to have Wegener's Granulomatosis http://home.bt.com/lifestyle/wellbeing/could-you-have-vasculitis-11363983660870
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
May's Blog - Lynne's experience of her first rheumatology appointment
I had a diagnosis of
urticarial
vasculitis
but with a positive ANA, Ro, La, double-stranded DNA and so on - they suspected that there was more to it. At the appointment the rheumatologist asked me for a full medical history going back to childhood and she also asked about my family history.
I had a diagnosis of
urticarial
vasculitis
but with a positive ANA, Ro, La, double-stranded DNA and so on - they suspected that there was more to it. At the appointment the rheumatologist asked me for a full medical history going back to childhood and she also asked about my family history.
Paul_Howard
LUPUS UK
in
LUPUS UK
9 years ago
Vasculitis and the ears and eyes
I am sorry that I seem to be back again...still no diagnosis but then I have largely given up seeing any doc over last year as I feel so dissillusioned, However, in addition to my chronic pain at the back of my nose somewhere, I now have frequent bouts of double or blurred vision. optician says eyes
I am sorry that I seem to be back again...still no diagnosis but then I have largely given up seeing any doc over last year as I feel so dissillusioned, However, in addition to my chronic pain at the back of my nose somewhere, I now have frequent bouts of double or blurred vision. optician says eyes
Tinkytink
in
Vasculitis UK
9 years ago
ANCA neg
I have read with interest the discussion about ANCA neg. I was diagnosed two years ago and what I have found out is the medics do a load of blood tests and depending on the results you are given a label. Sorry to say this but you have to fit the book.
I have read with interest the discussion about ANCA neg. I was diagnosed two years ago and what I have found out is the medics do a load of blood tests and depending on the results you are given a label. Sorry to say this but you have to fit the book.
Hidden
in
Vasculitis UK
9 years ago
Vasculitis East Midlands Support Group - Saturday May 2nd.
Just wanted to say what an excellent meeting we had on Saturday. Lots of fun, chat, conversation and a really great session on how to cope with stress. A big thank you to Alice, Specialist Rheumatology Nurse for leading this session. So many benefited from this. :-) We were a group of 26, youngest was
Just wanted to say what an excellent meeting we had on Saturday. Lots of fun, chat, conversation and a really great session on how to cope with stress. A big thank you to Alice, Specialist Rheumatology Nurse for leading this session. So many benefited from this. :-) We were a group of 26, youngest was
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Stupid Dr
Am in a relapse phase with my Wegeners. Had Rituximab infusion x2 Jan and Feb and am currently on pred 20 mg. Currently in hospital with acute shortness of breath. Dr s thought it was a blod clot but CT clear. Dr came around last night to tell me this but then said there's something wrong there but
Am in a relapse phase with my Wegeners. Had Rituximab infusion x2 Jan and Feb and am currently on pred 20 mg. Currently in hospital with acute shortness of breath. Dr s thought it was a blod clot but CT clear. Dr came around last night to tell me this but then said there's something wrong there but
Llinos
in
Vasculitis UK
9 years ago
Cyclophosphamide side effects
Had my first Cyclophosphamide infusion last week, felt fine on the day but was so sick the following day that I couldn't even keep a sip of water down. Since then I've been so weak and shaky that the washing up is starting to pile - I just can't stand up long enough to get it sorted. The fridge is bare
Had my first Cyclophosphamide infusion last week, felt fine on the day but was so sick the following day that I couldn't even keep a sip of water down. Since then I've been so weak and shaky that the washing up is starting to pile - I just can't stand up long enough to get it sorted. The fridge is bare
woollysox
in
Vasculitis UK
9 years ago
Vasculitis and Trying to conceive
Hi, I am new to this but I have been trying to control my vasculitis for about 2 years now. I have small vessel Vasculitis where I get the rash and also my stomach inflames. I am on steriods currently, I was just wondering if any one has had any issues with conceiving with vasculitis. I am trying to
Hi, I am new to this but I have been trying to control my vasculitis for about 2 years now. I have small vessel Vasculitis where I get the rash and also my stomach inflames. I am on steriods currently, I was just wondering if any one has had any issues with conceiving with vasculitis. I am trying to
Phpetty86
in
Vasculitis UK
9 years ago
North east specialist Wegeners/GPA??
I feel like I keep bobbing in and out of this forum looking for answers to health problems for myself, my sister and my son who have very similar symptoms at different stages of progression. My sis is now due to see Dr Lordon at Newcastle as she has pronounced lung involvement so may yet get a diagnosis
I feel like I keep bobbing in and out of this forum looking for answers to health problems for myself, my sister and my son who have very similar symptoms at different stages of progression. My sis is now due to see Dr Lordon at Newcastle as she has pronounced lung involvement so may yet get a diagnosis
Tinkytink
in
Vasculitis UK
9 years ago
Update for the Vasculitis Patient Symposium April 18th 2015
Vasculitis Patient Symposium 2015 Speakers: Dr Neil Basu (Aberdeen) Dr Nina Brown (Manchester) Dr Maria Cinta Cid (Barcelona) Dr Thomas Hauser (Zurich) RNS Julie Ingall (Portsmouth) Dr Rachel Jones (Cambridge) Dr Peter Lanyon (Nottingham) Dr
Vasculitis Patient Symposium 2015 Speakers: Dr Neil Basu (Aberdeen) Dr Nina Brown (Manchester) Dr Maria Cinta Cid (Barcelona) Dr Thomas Hauser (Zurich) RNS Julie Ingall (Portsmouth) Dr Rachel Jones (Cambridge) Dr Peter Lanyon (Nottingham) Dr
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Updated page on the VUK website for Central Nervous System Vasculitis
Updated page on the Vasculitis UK website for Central Nervous System Vasculitis also known as Cerebral Vasculitis please follow this link for more details. http://www.vasculitis.org.uk/about-vasculitis/central-nervous-system-vasculitis
Updated page on the Vasculitis UK website for Central Nervous System Vasculitis also known as Cerebral Vasculitis please follow this link for more details. http://www.vasculitis.org.uk/about-vasculitis/central-nervous-system-vasculitis
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Vasculitis in Children
We have noticed there are one or two members of the community who have children with Vasculitis so we thought we might share this page from the VUK website - this page includes Henoch Schönlein purpura (HSP), Kawasaki disease (KD), Polyarteritis nodosa (PAN) , ANCA associated vasculitis (AAV) and Takayasu
We have noticed there are one or two members of the community who have children with Vasculitis so we thought we might share this page from the VUK website - this page includes Henoch Schönlein purpura (HSP), Kawasaki disease (KD), Polyarteritis nodosa (PAN) , ANCA associated vasculitis (AAV) and Takayasu
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Oxford Vasculitis Seminar March 29th 2015
Really interesting, informative and excellent Oxford Vasculitis Support Group meeting yesterday - around 40 attended this meeting... ..... Speakers were Prof Raashid Luqmani - discussing the training website for assessment of Vasculitis ( BVAS/VDI) , Dr Christina Ponte - giving an update
Really interesting, informative and excellent Oxford Vasculitis Support Group meeting yesterday - around 40 attended this meeting... ..... Speakers were Prof Raashid Luqmani - discussing the training website for assessment of Vasculitis ( BVAS/VDI) , Dr Christina Ponte - giving an update
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
My mum
Hi there. My mum has been recently diagnosed with Wegeners granulomatosis. She's in her 50's and I am beyond worried and upset about her prognosis. I'm not well educated in the facts and progress about her condition so any help or info would be so greatly appreciated. Thanks in advance.
Hi there. My mum has been recently diagnosed with Wegeners granulomatosis. She's in her 50's and I am beyond worried and upset about her prognosis. I'm not well educated in the facts and progress about her condition so any help or info would be so greatly appreciated. Thanks in advance.
hgibbo
in
Vasculitis UK
9 years ago
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