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Urticarial vasculitis
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Has anyone ever experienced anxiety or panic attacks, not because of knowing they have Vasculitis, but because of it itself??
This question was asked by someone on the fb Vuk group, so I thought I would ask in the VUk/HU group too. We thought it was a very interesting question.
This question was asked by someone on the fb Vuk group, so I thought I would ask in the VUk/HU group too. We thought it was a very interesting question.
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Does anybody have any good clear photos of symptoms of their vasculitis eg:- rash red eyes saddle nose spots ulcers damaged fingers toes?
We need pictures of these things for the new vasculitis Route Map and for the New Website. They are surprisingly hard to come by as doctors and hospitals are reluctant to let others use them or sometimes they are copy right. Obviously they would be used anonymously and any photos that might be recognisable
We need pictures of these things for the new vasculitis Route Map and for the New Website. They are surprisingly hard to come by as doctors and hospitals are reluctant to let others use them or sometimes they are copy right. Obviously they would be used anonymously and any photos that might be recognisable
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Charlotte is half way to her target!! Charlotte has Wegeners Granulomatosis and is doing a bungee jump for Vasculitis Uk
http://www.justgiving.com/Charlotte-WilliamsVasUK I'm Charlie and I'm doing a bungee jump to raise money for Vasculitis UK, I want to raise awareness of Vasculitis and conditions like Wegener's Granulomatosis. I've had Wegener's Granulomatosis since I was 13 but I wasn't diagnosed until I was 17.
http://www.justgiving.com/Charlotte-WilliamsVasUK I'm Charlie and I'm doing a bungee jump to raise money for Vasculitis UK, I want to raise awareness of Vasculitis and conditions like Wegener's Granulomatosis. I've had Wegener's Granulomatosis since I was 13 but I wasn't diagnosed until I was 17.
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
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How holding a fundraising event for Vasculitis UK with a few friends from our own home helped raise awareness locally.
Just something I wanted to share. John and I decided to have a fund raising lunch at the end of February for Rare Disease Awareness Day. We had never done anything like this before in our village. John made homemade onion soup. We just invited a few friends at short notice and until recently not many
Just something I wanted to share. John and I decided to have a fund raising lunch at the end of February for Rare Disease Awareness Day. We had never done anything like this before in our village. John made homemade onion soup. We just invited a few friends at short notice and until recently not many
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Candy is running the 28th Hastings Half Marathon on Sun 25th March 2012 and also running the Ashford District 10K on Sun 18th March 2012
Candy is running for the Hastings half marathon 13.1 miles to raise money for Vasculitis UK in the memory of Clare Grossman, a former Ashford AC sadly passed away in the New Year Eve 2 years ago fighting disease of Wegners Granulomatosis. Candy is running the 28th Hastings Half Marathon on Sunday 25th
Candy is running for the Hastings half marathon 13.1 miles to raise money for Vasculitis UK in the memory of Clare Grossman, a former Ashford AC sadly passed away in the New Year Eve 2 years ago fighting disease of Wegners Granulomatosis. Candy is running the 28th Hastings Half Marathon on Sunday 25th
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Vasculitis Support Group West Midlands Meeting today.
Todays meeting at Birmingham was attended by about 60 people. As usual it was a most interesting event and the two speakers were excellent, both in terms of their style and what they had to say. David Carruthers talk about all aspects of the "Diagnostic Process", emphasing that test results were only
Todays meeting at Birmingham was attended by about 60 people. As usual it was a most interesting event and the two speakers were excellent, both in terms of their style and what they had to say. David Carruthers talk about all aspects of the "Diagnostic Process", emphasing that test results were only
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Living with HUVs Sarah's blog Sarah has Hypocomplementic Urticarial Vasculitis
http://sarahjh2004-livingwithhuvs.blogspot.com/#!/
http://sarahjh2004-livingwithhuvs.blogspot.com/#!/
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
This is post from the Vasculitis Uk face book group from a young lady called Charley, it sends such a positive message.
Charley has Wegeners Granulomatosis. She had a rare severe reaction to Rituximab. Charley is now taking methotrexate as a maintenance medication. "Well I found out after waiting a year that I can drive again!! Rituximab gave me seizures and the DVLA have finally said its ok! I have a job as
Charley has Wegeners Granulomatosis. She had a rare severe reaction to Rituximab. Charley is now taking methotrexate as a maintenance medication. "Well I found out after waiting a year that I can drive again!! Rituximab gave me seizures and the DVLA have finally said its ok! I have a job as
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Vasculitis-uk support research at Addenbrookes for a new drug trial for treatment of vasculitis.
Dr David Jayne's team led by Dr Rona Smith at Addenbrookes are undertaking research into an existing drug, Alemtuzumab, to see if it proves to be effective in treating ANCA related vasculitis. Alemtuzumab, which is one of the new generation of monoclonal antibodies, like Rituximab. Alemtuzumab
Dr David Jayne's team led by Dr Rona Smith at Addenbrookes are undertaking research into an existing drug, Alemtuzumab, to see if it proves to be effective in treating ANCA related vasculitis. Alemtuzumab, which is one of the new generation of monoclonal antibodies, like Rituximab. Alemtuzumab
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Charlie has Wegeners Granulomatosis, she is doing a bungee jump to raise money for Vasculitis UK, to raise awareness of Vasculitis.
This is Charlie's message on her justgiving page :-) If you feel you can support Charlie please follow the link below. "I have had Wegener's Granulomatosis since I was 13 but I wasn't diagnosed until I was 17. It's a disease that can affect any part of your body, it's so unpredictable and really
This is Charlie's message on her justgiving page :-) If you feel you can support Charlie please follow the link below. "I have had Wegener's Granulomatosis since I was 13 but I wasn't diagnosed until I was 17. It's a disease that can affect any part of your body, it's so unpredictable and really
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Vasculitis Support Group West Midlands (VSGWM) Meeting will be held on Sunday 23rd October at the Hilton Birmingham Bromsgrove Hotel.
The speakers/topics: Dr David Carruthers - topic... Diagnostic Tests for Vasculitis and Dr Andrew McClean - topic....Research into Fatigue and vasculitis Contact davsamuk@yahoo.co.uk Meet and greet 12 noon meeting starts at 1.15pm No food provided only coffee and bisuits.
The speakers/topics: Dr David Carruthers - topic... Diagnostic Tests for Vasculitis and Dr Andrew McClean - topic....Research into Fatigue and vasculitis Contact davsamuk@yahoo.co.uk Meet and greet 12 noon meeting starts at 1.15pm No food provided only coffee and bisuits.
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Does anyone with any type of Vasculitis suffer from a relapse, flare or ill health due to stress or upset in their life?
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
FATIGUE and ANCA Associated Vasculitis
Next year Dr Andrew McClean will hopefully be talking about his 2 year research project Fatigue with ANCA associated Vasculitis.. Andrew is still wanting volunteers both Healthy and with Vasculitis. But more healthy volunteers (family member, friend, work colleague) as he has to match like with like.
Next year Dr Andrew McClean will hopefully be talking about his 2 year research project Fatigue with ANCA associated Vasculitis.. Andrew is still wanting volunteers both Healthy and with Vasculitis. But more healthy volunteers (family member, friend, work colleague) as he has to match like with like.
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
West Country Vasculitis Support Group
West Country Vasculitis Support Group meeting Wednesday 12 October - 6.30pm The Renal Seminar Room, Sid Ward RD&E Wonford Hospital Barrack Road, Exeter EX2 5DW The speaker is Dr Lucy Smyth and her topic is "vasculitis" If anyone fancies staying afterwards for a bite to eat at a
West Country Vasculitis Support Group meeting Wednesday 12 October - 6.30pm The Renal Seminar Room, Sid Ward RD&E Wonford Hospital Barrack Road, Exeter EX2 5DW The speaker is Dr Lucy Smyth and her topic is "vasculitis" If anyone fancies staying afterwards for a bite to eat at a
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Do you have problems explaining to people around you what "Vasculitis" is? Family, friends or work colleagues?
We have been contacted by quite a few people to the run up to Christmas and the same phrase has come up 3 times.... "They just don't get it!" One was about their boss and work colleagues, another was about teachers and fellow class mates and the other was about direct family. I found it was difficult
We have been contacted by quite a few people to the run up to Christmas and the same phrase has come up 3 times.... "They just don't get it!" One was about their boss and work colleagues, another was about teachers and fellow class mates and the other was about direct family. I found it was difficult
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Can we use rituximab to prevent the return of ANCA vasculitis | Arthritis Research UK
http://www.arthritisresearchuk.org/research/grant-tracker-items/2011/can-we-use-rituximab-to-prevent-the-return-of-anca-vasculitis.aspx
http://www.arthritisresearchuk.org/research/grant-tracker-items/2011/can-we-use-rituximab-to-prevent-the-return-of-anca-vasculitis.aspx
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Healthy Volunteers Wanted for Dr Andrew McClean's Research Project "Why do patients with ANCA Associated Vasculitis Experience Fatigue?"
Are there any Healthy people out there who are willing to take part in Dr Andrew McClean's research project. "Fatigue in ANCA Associated Vasculitis" They MUST be healthy (high BP or cholesterol is fine, but no major illness), white British, and as close to 60ish as possible. Andrew still wants more
Are there any Healthy people out there who are willing to take part in Dr Andrew McClean's research project. "Fatigue in ANCA Associated Vasculitis" They MUST be healthy (high BP or cholesterol is fine, but no major illness), white British, and as close to 60ish as possible. Andrew still wants more
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Has anyone with any type of vasculitis suffered a Carcinoma of the bladder due to the side effects of the Cyclophosphamide?
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
This is Jimmy's Just Giving Page Jimmy has WG and is walking 79 miles for Vasculitis UK in the Scottish Highlands
Here is My 76mile -Sutherland trail - Charity Walk page - I hope those who can afford it will be willing to spare a few pounds for a Charity that has a Big effect on my life - As most who know me understand, I was diagnosed in 2007 with Wegeners Granulomatosis, a form of Vasculitis-This Auto-Immune disorder
Here is My 76mile -Sutherland trail - Charity Walk page - I hope those who can afford it will be willing to spare a few pounds for a Charity that has a Big effect on my life - As most who know me understand, I was diagnosed in 2007 with Wegeners Granulomatosis, a form of Vasculitis-This Auto-Immune disorder
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Thought I would just share this. Today we received a letter.....
.... from a lovely lady asking for a copy of the newsletter, she is 57 years old she was diagnosed with WG in 2009. She also said that her sister died in 2002 aged 38 yrs of WG, she was diagnosed in 1995. This lady had so many questions she wanted to ask.....Does anyone know of other people who have
.... from a lovely lady asking for a copy of the newsletter, she is 57 years old she was diagnosed with WG in 2009. She also said that her sister died in 2002 aged 38 yrs of WG, she was diagnosed in 1995. This lady had so many questions she wanted to ask.....Does anyone know of other people who have
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
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