Posts - Vasculitis UK | HealthUnlocked

Moderator•8 years ago

Ranges across diagnosis, treatment, attitudes #vasculitis #raredisease...

My Rare Disease Day blog on implications of living with a rare disease

vivdunstan

Volunteer•8 years ago

From Twitter this morning Morning Stories: The Struggle With Rare Diseases - Sky News...

Rare Disease Day - Alistair Kent speaking about the struggles with Rare Diseases - SkyNews

From Twitter this morning Morning Stories: The Struggle With Rare Diseases - Sky...

Moderator•8 years ago

We are trying a new venue for our next lunch in Exeter. Details are as follows: Date: Sunday 3 April Time: 12.00 noon Venue: The Pinhoe Hoard,...

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West Country Vasculitis Support Group Lunch

We are trying a new venue for our next lunch in Exeter. Details are as follows:...

DevonLottie

•8 years ago

5 Replies

Rare Disease Day Event Birmingham Children's Hospital - Rare Disease Day 2016

Brilliant day today at the Birmingham Children's Rare Disease Day Event to raise awareness of Rare diseases in children and to support the new Rare Disease...

Brilliant day today at the Birmingham Children's Rare Disease Day Event to raise...

Moderator•8 years ago

Senior citizens in café chatting... 'My arms are so weak I can hardly hold this cup.' 'Yes I know, my cataracts are so bad now that I have trouble seeing.' 'I...

Time For A Laugh

Senior citizens in café chatting... 'My arms are so weak I can hardly hold this ...

lfu2

•8 years ago

The next meeting of the Vasculitis East Midlands Network will be held in Leicester in the Rowan Room at the Belmont Hotel, 20 De Montfort Square, Leicester LE1...

Leicester Vasculitis Support Group Meeting - April 2nd 2016

The next meeting of the Vasculitis East Midlands Network will be held in Leicest...

Moderator•8 years ago

Another survey from EURORDIS This survey is about the drugs you take for your rare disease. John has completed it. Follow this link to complete the survey....

European Organisation for Rare Diseases Survey

Another survey from EURORDIS This survey is about the drugs you take for your r...

Moderator•8 years ago

I was diagnosed with WG over 17 years ago with Saddle nose deformity and I have chronic kidney failure too. I have been receiving Rituximab every 6 months for...

Left sided heart failure and Vasculitis. Anyone else been diagnosed with this ?

I was diagnosed with WG over 17 years ago with Saddle nose deformity and I have ...

Essex-jill

•8 years ago

A talk about EPGA / Churg Strauss Syndrome from Professor Chauhan on Sunday 20th March, in King's Sutton, near Vanbury. Contact Sue Ashdon on...

Oxfordshire Vasculitis Support Group Seminar 2016

A talk about EPGA / Churg Strauss Syndrome from Professor Chauhan on Sunday 20th...

SueAshdown

•8 years ago

3 Replies

Azatheoprine

Hi guys, You may have seen I posted a few weeks ago about my GPA and my consultants proposed 'maintenance' treatment of daily Azatheoprine. I had some...

Hi guys, You may have seen I posted a few weeks ago about my GPA and my consul...

Marcus1988

•8 years ago

Has anybody with G.P.A been diagnosed with Cardiac Syndrome X.

Cardiac Syndrome X

ARFalk

•8 years ago

6 Replies

Prednisilone and Heart Failure

Hi All, CSS/EGPA almost 8 years and it seriously affected my heart amongst other things. Does anyone have heart involvement with their CSS/EGPA and take...

Hi All, CSS/EGPA almost 8 years and it seriously affected my heart amongst othe...

HiveMind

•8 years ago

18 Replies

Night sweats after stopping Prednisone

My finance was diagnosed with ANCA vasculitis MPA March of 2014. Needless to say he was on many drugs (including Prednisone) but now he's only on 150mg of...

My finance was diagnosed with ANCA vasculitis MPA March of 2014. Needless to say...

Christina1960

•8 years ago

8 Replies

cryoglounemia

I was initially seen by a neurologist, shifted to a haematologist and i have asked to a see a nephrologist,which will be on Monday. I had 5 days of...

I was initially seen by a neurologist, shifted to a haematologist and i have as...

Alvess123

•8 years ago

I really dislike my bone doc. She doesn't listen and she doesn't care! I asked for my whole condition/symptoms to be reviewed and she kept asking me what I...

I do not like my bone doc

I really dislike my bone doc. She doesn't listen and she doesn't care! I asked f...

Hidden

•8 years ago

12 Replies

I'm ill and can't get benefits

5 years ago I lost my husband to Brian hemorrhage I was left his pension from a job he retired from due to ill health 11 years before death I ended up with...

5 years ago I lost my husband to Brian hemorrhage I was left his pension from a ...

Hidden

•8 years ago

5 Replies

Confused with blood tests

Hi I need some answer as I am a bit confused at the moment. I got some blood tests results which shows positive p ANCA, but the rest of ANCA results are...

Hi I need some answer as I am a bit confused at the moment. I got some blood te...

Nikita2012

•8 years ago

6 Replies

New to this site

Hey all I'm new to this site, but not to GPA. I'm struggling to deal with it all at the moment, I have a lot of anger towards my condition as I was diagnosed...

Hey all I'm new to this site, but not to GPA. I'm struggling to deal with it all...

Hidden

•8 years ago

29 Replies

How well engaged and involved patients are with their health care - Survey

Vasculitis UK are now members of Eurordis , (European Rare Disease Organisation) and we are supporting this survey "How well patients are involved in their...

Vasculitis UK are now members of Eurordis , (European Rare Disease Organisation)...

My 81 year old dad has just been diagnosed with cerebral vasculitis and I dont see a lot about it on the Internet. Any idea on things like driving again after...

Moderator•8 years ago

2 Replies

Cerebral vasculitis

My 81 year old dad has just been diagnosed with cerebral vasculitis and I dont s...

Tazzi22

•8 years ago

Has anyone with cerebral vascultis had a second attack of it? After 7 years relatively free certainly from any new neurological symptoms, I have just spent two...

Second attack of cerebral vasculitis

Has anyone with cerebral vascultis had a second attack of it? After 7 years rela...

milliewin

•8 years ago

Hi everyone. I'm new here. I apologise if my query is already answered in other groups. I had a look through and couldn't find specifically what I'm looking...

New diagnosis.

Hi everyone. I'm new here. I apologise if my query is already answered in other ...

hugs84

•8 years ago

17 Replies

NEED ADVICE

Hi, My dad returned from holiday in Malta at the end of January with mosquito bites and an awful rash. He has been diagnosed to have Vasculitis but by a...

Hi, My dad returned from holiday in Malta at the end of January with mosquito b...

JD17

•8 years ago

5 Replies

warfarin and steroids

I am experiencing difficulties with warfarin mainly because of the steroids. At the moment I am being weaned of Azathioprin I am down to 50mg and I am on 5 mg...

I am experiencing difficulties with warfarin mainly because of the steroids. At ...

anntc

•8 years ago

10 Replies

Eurordis Membership for Vasculitis UK 2016

VUK are pleased to announce that Vasculitis UK are now official members of Eurordis, (Rare Disease Europe) The European Organisation for Rare Diseases....

VUK are pleased to announce that Vasculitis UK are now official members of Euror...

Moderator•8 years ago

Lynne Jacques will be holding the next West Yorkshire support group meeting on Sunday the 24th of April 2016 between 1:30pm and 4:30pm. As usual, the meeting...

West Yorkshire Vasculitis Support Group

Lynne Jacques will be holding the next West Yorkshire support group meeting on S...

RichardE

Volunteer•8 years ago

Richard Eastoe will hold the next York support group meeting on Sunday the 10th of April 2016 between 1:30pm and 4:30pm. The meeting will be held at...

York Vasculitis Support Group

Richard Eastoe will hold the next York support group meeting on Sunday the 10th ...

RichardE

Volunteer•8 years ago

2 Replies

Is "watch and wait" approach to treatment a risky decision?

Greetings everyone! This is my first post, so I hope you will bear with me please. I’ve tried to be explicit but brief, but I apologize now for the length of...

Greetings everyone! This is my first post, so I hope you will bear with me plea...

judya

•8 years ago

Rare Disease UK will mark international Rare Disease Day (Monday 29 February) by hosting a number of Parliamentary Receptions across the UK. Edinburgh, London,...

Rare Disease Day - will be marked by Rare Disease UK by hosting a series of receptions here in the UK

Rare Disease UK will mark international Rare Disease Day (Monday 29 February) by...

Moderator•8 years ago