Posts - Vasculitis UK | HealthUnlocked

Moderator•10 years ago

I have severely compromised lungs due to sarcoidosis. Last year I lost a lot of weight (about 22 kilos), and considering I was only 62 kilo to start, I am...

Severe weight loss

I have severely compromised lungs due to sarcoidosis. Last year I lost a lot of ...

Amrit1947

•10 years ago

Do you have Vasculitis and have been experiencing problems with benefits or assessments? These surveys are in response to the request for feedback by the...

Disability Benefits Consortium Needs Your Help

Do you have Vasculitis and have been experiencing problems with benefits or asse...

Moderator•10 years ago

If you have been diagnosed with a long term condition such as Vasculitis and live in the Lothian area of Scotland you may want to take part in this survey....

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Have you been diagnosed with a long term health condition such as Vasculitis and live in the Lothian area of Scotland?

If you have been diagnosed with a long term condition such as Vasculitis and liv...

Moderator•10 years ago

We are now moving to Norfolk and hope that my husband will be able to go back to be treated at Addenbrookes. Has anyone had any experience with other hospitals...

Moving Areas

We are now moving to Norfolk and hope that my husband will be able to go back to...

Nadine99

•10 years ago

5 Replies

Inspirational Story from the Northern Echo Yesterday

Emily Simpson was just about to take her dog for a walk when she collapsed in a heap at her home in July 2012. After many tests, the 12-year-old was diagnosed...

Emily Simpson was just about to take her dog for a walk when she collapsed in a ...

Moderator•10 years ago

I have urticarial vasculitis and am getting increasing what feels like muscle pain. I am in pain walking as I am getting bilateral calf pain, does anyone else...

Muscle pain

I have urticarial vasculitis and am getting increasing what feels like muscle pa...

vickylou01

•10 years ago

23 Replies

Wales Rare Disease Charities Deliver a petition to the Welsh Assembly

Last week, Welsh ‎Rare Disease charities‬ delivered a petition to the Welsh Assembly for ‪Access to Treatment in Wales......to call on the National Assembly...

Last week, Welsh ‎Rare Disease charities‬ delivered a petition to the Welsh Ass...

Moderator•10 years ago

I have been referred to a vascular. Clinic owing to leg infections whic is not clearing up dose anyone know what I need to. Expect from this visit as it is my...

Vascular clinic

I have been referred to a vascular. Clinic owing to leg infections whic is not c...

Yorkie369

•10 years ago

Many thanks to all of you that replied to my post re. Low red blood cell counts. From the majority of replies it would seem that it is the vasculitis that...

Low red blood cell counts

Many thanks to all of you that replied to my post re. Low red blood cell counts....

Albasain

•10 years ago

My Churg Strauss diagnosis was a year ago now. Hands and feet aren't too bad now, but I'd rather have my old ones back! They fitted so much better. I guess...

Hands and feet

My Churg Strauss diagnosis was a year ago now. Hands and feet aren't too bad no...

jaydub

•10 years ago

4 Replies

Low red blood cell counts

In all the blood tests I have had because of Vasculitis I have noticed that my Haemaglobin and red blood cell counts are lower than the normal range expected....

In all the blood tests I have had because of Vasculitis I have noticed that my H...

Albasain

•10 years ago

9 Replies

100,000 Genomes Project - Genetic Alliance UK (Rare Disease UK)

100,000 Genomes Project The project is currently in its pilot phase and Genetic Alliance UK has been asked to gather the views of individuals and their...

100,000 Genomes Project The project is currently in its pilot phase and Geneti...

Just to let you known that Sam and I will be at Chapel Allerton Hospital, Leeds on the third Thursday of every month if you want to call in for a chat and a...

Moderator•10 years ago

6 Replies

Yorkshire Support Groups

Just to let you known that Sam and I will be at Chapel Allerton Hospital, Leeds ...

LynneJ

Vasculitis UK•10 years ago

There is a new forum on face book and twitter called NHS Youth Forum - this forum works with NHS England to improve healthcare for young people.

New Forum on Facebook and Twitter for Young People

There is a new forum on face book and twitter called NHS Youth Forum - this foru...

Moderator•10 years ago

Just wanted to say we ( myself, Susan and Jacqui ) had a very strange experience yesterday at the Film and Comic Convention at Earls Court, where we visited...

FILM & COMIC CON, Sunday 13th July

Just wanted to say we ( myself, Susan and Jacqui ) had a very strange experience...

John_Mills

Volunteer•10 years ago

Congratulations to all who took part in the. British. London 10K yesterday for Vasculitis UK. :-) The times of all those running for VUK were just amazing!

Congratulations to all who took part in the British London 10K on Sunday.

Congratulations to all who took part in the. British. London 10K yesterday for V...

John_Mills

Volunteer•10 years ago

My answer is no to both questions but I was not given the options to say so.

No options

alybill

•10 years ago

Genetic Alliance UK in collaboration with the Tuberous Sclerosis Association and Association for Glycogen Storage Disorders recently submitted a petition to...

Genetic Alliance UK will be presenting a petition to Assembly Members on the steps of the Senedd in Cardiff Bay at 1pm tomorrow

Genetic Alliance UK in collaboration with the Tuberous Sclerosis Association and...

Moderator•10 years ago

Hi, just a quick reminder that about our BBQ on Sunday 27 July. If anyone is planning on coming and hasn't yet let me know could you please return your form to...

South west group summer bbq

Hi, just a quick reminder that about our BBQ on Sunday 27 July. If anyone is pla...

DevonLottie

•10 years ago

Tthe UK Ghostbusters will be collecting for Vasculitis UK and helping to raise awareness of vasculitis at the London Film and Comic Con at Earls Court in...

The UK Ghostbusters will be raising awareness of Vasculitis this weekend in London

Tthe UK Ghostbusters will be collecting for Vasculitis UK and helping to raise a...

Moderator•10 years ago

Excellent day - interesting, interactive and informative Hopefully there will be a write up in the next VUK newsletter :-) "Let's keep the snow ball we...

Excellent conference at the Genetic Alliance UK (Rare Disease UK) AGM on Tuesday

Excellent day - interesting, interactive and informative Hopefully there will...

Moderator•10 years ago

Hi everyone! I'm new here, so I'm wondering If anyone else has my symptoms: Pain, numbness, prickely feeling in their chest and ribcage?

Sfserano

•10 years ago

I have so much pain with both conditions, and take Naproxen, Gabapentin and Solpodol. I have an appointment on the 29th July with a rheumatologist, but lately...

Not coping with the pain of osteoarthritis and vasculitis

I have so much pain with both conditions, and take Naproxen, Gabapentin and Solp...

Solidflo

•10 years ago

Does anybody know what the difference is between cerebral vasculitus and cerebral vasculopathy?

Vasculitus or vasculophy

Does anybody know what the difference is between cerebral vasculitus and cerebra...

Louzoejf29

•10 years ago

4 Replies

How long for Rituximab to work for Wegeners?

I had my 1st Rituximab infusion 4 weeks ago and 2nd one 2 weeks ago. I have yet to feel any benefit and in fact my symptoms have worsened as my steroids are...

I had my 1st Rituximab infusion 4 weeks ago and 2nd one 2 weeks ago. I have yet...

Maudy1

•10 years ago

23 Replies

Kidney Care Cookbook

Vasculitis can cause kidney damage. This kidney care cookbook which was created by TV Chef Lawrence Keogh, Head Chef at Roast and BBC’s Saturday Kitchen along...

Vasculitis can cause kidney damage. This kidney care cookbook which was created ...

Moderator•10 years ago

Former GB rower Dave Hampton said celebrity training guru Professor Greg Whyte, who trained David Williams to swim the length of the river in 2011, inspired...

Hi all ,has anyone had an op while on azathiaprine ? I am due to have one soon and take 150 mg daily , i have css .

kujude

•10 years ago

8 Replies

Bucks Free Press - Dave swims the Henley Regatta fundraising for Vasculitis UK

Former GB rower Dave Hampton said celebrity training guru Professor Greg Whyte, ...

Moderator•10 years ago

Hi, I’ve been diagnosed with Wegners Granulomatosis (WG) back in 2008 and have just had recent flare. The symptoms were totally different t

Haggiss

•10 years ago