How did you find out about the Vasculitis UK... - Vasculitis UK

Vasculitis UK

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How did you find out about the Vasculitis UK HealthUnlocked Community? Please leave any "appropriate" comments.

Suzym2u profile imageSuzym2uModeratorVasculitis UK107 Voters

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27 Replies
annsouthren profile image
annsouthren

Lynn Jaques informed me and I'm very grateful

My consultant recommended these sites.

Chezh profile image
Chezh

My friend recommended Health Unlocked, I then noticed the Vasculitis Health Unlocked community.

Mc89 profile image
Mc89

I'm a member of the IBS site via the IBS Network & searched out the vasculitis site when my husband had HSP. It was very comforting to find a group that understood what HSP was as very few people had heard of it. Thank you.

Angelajones777 profile image
Angelajones777

I found out about your site looking up my condition churg Strauss syndrome

kath12341 profile image
kath12341

I saw a counsellor through work when first diagnosed with wg and she found the site for me

Kenneth profile image
Kenneth

I was a member of the Stewart Strange trust since 1996. Dr. Martin Lockwood introduced me to it.

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply toKenneth

We were at a Vasculitis meeting today, in Cambridge, named after Dr Martin Lockwood

Best Wishes

Susan

web search MPA

I'm a member of Health Unlocked and browsed through the site sections.

I googled my symptoms and it came up with a post on the HU vasculitis group. It was through this group I found out about Vasculitis UK and all it does, including the support groups. Often wondered why there there was no leaflet from the hospital, like other charities do.

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to

VUK share many leaflets with the medical profession :-) and hospitals. There are over 150 doctors plus nurses on the VUK mailing list. :-)

in reply toSuzym2u

I thought as much, I wasn't doubting the work of VUK :-)

grace_888 profile image
grace_888

Shopping on the web for information on vasculitis .

Mgt1234 profile image
Mgt1234

My consultant provided me with the information.

ruby541 profile image
ruby541

I was searching for uveitis info and came across the site. I have now been diagnosed with probable neuro behcet's disease and the web is the only place that has heard of it!

suffolkgirl profile image
suffolkgirl

I'm not sure, but I think I just found it by Googling!

Mooka profile image
Mooka

Came across it whilst googling vasculitis.

I already belonged to other communities on HU, so when I was diagnosed with Vasculitis, I searched for a community for it, so I joined. Then I found out about Vasculitis UK.

Pollie profile image
Pollie

When our local support group was started in Liverpool about 18 months ago, this website was given out to everyone, and is SO useful.

michichgo profile image
michichgo

I'm not certain. It was either the vuk website or intensive Google searches on the topic of MPA vasculitis.

Kentish_Man profile image
Kentish_Man

Found during a Google search on Vasculitis.

metalback profile image
metalback

Was given a leaflet about MPA from Stuart strange at hospital and joined

SusanneM profile image
SusanneM

Internet search

poppet2 profile image
poppet2

I am not sure - I think it was searching on the web for as much information as possible about Wegeners GPA. I am so glad I found it.

AndrewT profile image
AndrewT

Dear Susan,

I know that this is going to sound completely stupid but I have actually forgotten, how I first came across you. Thinking about it there is some information, regarding 'Vasculitis UK', at Addenbrooke's Hospital-and in the Transplant Unit. Though I have a feeling that I might have heard of you before that (scratch head)?????

I don't suppose that my answer has been of any help, at all, has it?

In any event I wish you John, and all your family, a happy and peaceful Christmas-not forgetting a Happy New Year.

AndrewT

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply toAndrewT

The same to you too, Andrew :-) x

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