New App to Support Vasculitis Patients and R... - Vasculitis UK

Vasculitis UK

7,864 members6,893 posts

New App to Support Vasculitis Patients and Research

Suzym2u profile image
Suzym2uModeratorVasculitis UK
8 Replies

If you have ANCA vasculitis which has involved your lungs, nose or sinuses, are now in remission, and you would like to be involved in developing this software, please follow this link for more details

vasculitis.org.uk/news/app-...

Written by
Suzym2u profile image
Suzym2u
Moderator
To view profiles and participate in discussions please or .
8 Replies
Sima1952 profile image
Sima1952

Hi Suzy, sorry to be a bit thick but l keep forgetting to ask these questions at the clinic, but what is the difference between ANCA and P-ANCA Vasculitis?

Any answers greatly recieved.

Sally

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply toSima1952

There are two types of ANCA , c-ANCA and P-ANCA , c ANCA is usually associated with Wegeners Granulomatosis ( GPA ) and P ANCA with Microscopic Poliangiitis

Jools52 profile image
Jools52

Is remission defined by no longer being ANCA +

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply toJools52

No , John has never been ANCA negative, always positive and has been considered to be in Clinical remission for many years.

Jools52 profile image
Jools52 in reply toSuzym2u

Thank you for the reply. I seem to be drawing a blank still and am suffering a lot but I have kind of stopped caring, if that makes any sense ? The worry was making me worse

in reply toJools52

Have you been seen at Addenbrookes yet?

What about a second opinion in Bristol?

bristol.ac.uk/clinical-scie...

Jools52 profile image
Jools52

Funny you should ask but now not going to addenbrookes as the rheumatologist spoke and wrote to them as is following the advice they gave. I now no longer get to see DR Gunawardena and wonder if he took umbrage at me as,img to go to there ?

I have an appointment at the free London next month to test for periodic fever syndrome but I am suffering though now not saying anything as it's jjsy a vicious circle. I do feel the appointments have a colder feel and that I am not really getting the attention I did but you know, I'm tired of it and of chasing people. For now I will just let things be as I don't really want to see the specialists under doctors as they even go to his room in mid appointment for advice. I am not going to rock the boat and am reconciled to whatever happens. I guess I am just sick of being sick and then I can get touchy and no one needs that

Thanks for asking

mejiagabriela profile image
mejiagabriela in reply toJools52

well Jools i never thought that sick people can tired doctors. The only Dr. in town San Diego CA able to deal with Wegner's is kind of getting tired of seeing Robert and not able to do much for him anymore; i am happy that we found someone else in Los Angeles more experience since Robert was starting to feel frustrated as well. So I feel you :)

Not what you're looking for?

You may also like...

New App available for Vasculitis Patients - February 2017

This has been posted on the website today it is A new App called patientMpower is available for...
Suzym2u profile image
Moderator

New Northamptonshire Vasculitis Support Group

Two people have decided to try and start a new vasculitis Support Group in the Northamptonshire...
Suzym2u profile image
Moderator

Exploring the Informational Needs for Vasculitis Patients and their Carers - Research Study

Vasculitis specialists Dr Richard Watts, from Ipswich Hospital and Dr Janice Mooney and research...
Suzym2u profile image
Moderator

I am seeking help from vasculitis patients

I am seeking help from vasculitis patients. I have one of the types vasculitis, Wegener’s...
Gma61 profile image

New to vasculitis

Hi there from Canada looking for advice as newly diagnosed with systemic anca vasculitis at 52 yrs...
Twin7 profile image

Moderation team

See all
Suzi70 profile image
Suzi70Administrator
JaneLE profile image
JaneLEAdministrator
Charlie_Harper profile image
Charlie_HarperAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.