I am seeking help from vasculitis patients - Vasculitis UK

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I am seeking help from vasculitis patients


I am seeking help from vasculitis patients. I have one of the types vasculitis, Wegener’s Granulomatosis and I am working towards my PhD. As part of this I am writing a Vasculitis Patient Information booklet. In order to do this, I need to know about and understand the problems and experiences of people suffering from vasculitis.

I need a mixture of genders, ages and most importantly different vasculitis diseases:-

Behcet’s disease, Buerger’s disease, Central Nervous System, Churg Strauss syndrome, Cryoglobulinemia, Giant Cell Arteritis, Henoch-Schönlein Purpura, Hypersensitivity vasculitis, Kawasaki disease, Microscopic polyangiitis, Polyarteritis nodosa, Polymyalgia rheumatica, Rheumatoid vasculitis, Takayasu’s arteritis, and Wegener’s Granulomatosis (GPA) - as well as other vasculities illness

I would like you to put yourself in the shoes of someone who has just visited the hospital and been newly diagnosed with your type of vasculitis. Knowing what you know now about your illness, what information do you think is important to know and be aware of.

I would also like to hear from patients who would be willing to tell the story of their illness. (Carers and families can also add something that would give another perspective) Points that need to be covered are:-

1) How long you had the disease before it was diagnosed and what were the symptoms

2) How it has affected you.

3) If you worked before your illness, how were you affected and what happened. Did you return to work full time, or part time or were you medically retired?

Have you taken up new hobbies/joined social groups/fund raising because of disease

How do you feel now? It’s your personal story and everyone will be different

This is to be no more than an A4 sheet

In the first instance please contact John Mills who will pass on your details to me.

Thank you

39 Replies

I am happy to help if you need to know about a patient with PAN

I'd be happy to write a bit about my experience with CSS.

Gma61 in reply to laidbackreader

Hi this is great thank you. You can either write a page yourself for me based on the questions or connect me on my private email address from John? thanks again

weeonescoop30 in reply to Gma61

Hi there, sorry to bother you, but can you tell me if this information book was made and if so who can source a copy of it for me to read through , i'm only 5 month diagnosed so still finding everything out and the hardest of all the trying was finding out my benefits i'm entitled to. I have applied for pip but was only awarded the standard rate of daily living , I'm waiting on them looking at my appeal. so at present l'm receiving SSP which is almost at the end of its 26 weeks and i'm not exactly inundated with information on the next steps to take or even what benefits to claim. So if the info booklet helps new suffers with this information then I would be happy to get a copy of one please. x


me too, wg/gpa


Gma61 in reply to hamble99b

Hi this is great thank you. You can either write a page yourself for me based on the questions or connect me on my private email address from John? thanks again

I would be happy to assist with Takayasu

Debbie157 in reply to HER351

Hi - I also have Tajyasus Arteritis - diagnosed at 25 and am now 58. Would be glad to share info with you

Hi there - I have central nervous system vas and would be happy to help. I will find out from John your email and send you a story (I'll keep it as brief as I can!) When do you want it by? Sounds interesting, Sarah


Sorry if I sound a little wary but do we want/need a patient booklet like this (bearing in mind we already have to route map)

Are you prepared to include some of the horror stories that some patients have suffered? e.g. My initial story wasn't too bad but the physical, emotional and financial 'cost' over the last 6 years has been horrendous but should newcomers be aware that such negatives may lay ahead?

Is this being published as a V-UK endorsed document? If not, what medical 'weight' will it carry?

How will it be distributed, by whom & to whom? To reach every doctor's waiting room, clinic, health centre, hospital etc will be expensive.

is there a financial cost to V-UK?

However, I'm a WG patient of 6 years with significant problems, mostly from damage by disease, and I'm to happy to contribute my experience.

Healthy and best wishes.


HiveMind in reply to Hidden

I agree with Martin in many respects.

I would hope that ALL aspects of the disease would be addressed. It is of no use to anyone to "sugar coat" the facts. However, it should be emphasised that "the bad bits" are possibilities for SOME and not something that WILL happen to ALL Vasculitis patients.

What I hope is to be emphasised is the help now available through the amazing Vasculitis UK, that wasn't available before. Also, highlighting the various specialists throughout the UK.

You (julesd) seem to want a LOT of personal information which, I for one, are uncomfortable with supplying to, in effect, a stranger. If this was a bona fide medical survey, I would be happy to help but I gather this is just for your dissertation? How does this help Vasculitis patients?

I'm sorry but I won't be supplying you with any information.

Gma61 in reply to HiveMind

If you would like to contact me directly I will explain it all to you in more detail. Personal information is gender, age and type of vasculities. I asked for volunteers through this site and please do contact me for clarification if you wish to.

Nothing is to be " sugar coated" as you say because what would be the point of that? And yes SOME people do suffer more than others after 51/2 years and spending more time in hospital Than at home I do understand!!

It is through sites like this that more awareness is made and patients can seek help, answers to questions and so forth and nobody what so ever would dispute this. People have worked so hard and all I am doing to buliding more awareness and like I said this is overseen by hospital consultants.

This is not been doing on a wim, a lot of thought, discussions with medical staff and meetings have and will be taking place.

I hope this helps clarify but like I say contact me directly to discuss this more as can anyone else if they have any questions. Is it better to talk to a person?

If you do not want to help or feel uncomfortable then that is up to you, of course. I can not say no more apart from this is been done for the patients like you and I, if we were newbies.

Hi i'm sure you'll be spoilt for choice as to who to include when it comes to WG but from a differetn some would say bizarre angle both myself and my husband have both been diagnosed with WG and no we didn't meet via a support group either. We've been together for over 35 years (I think!) married for nearly all that. I was EVENTUALLY diagnosed in 1999 and my husband in 2006. It was our Consultants that made us aware of environmental causes for our illness. So when we were told this I was just doing my Post Graduate Diploma and so chose this as the subject of that and did much research and have since. I never actually got to write it up because my husband was so ill at the time and us both being ill took it's toll in many way, but I did pass anyway. Since then years of research and speaking to many eminent Scientists, Doctors, Professors and so on from all over the world. Long story! I have tried to put my research to good use and to help others, as you say it's a terrible path we're thrown on to and we face an uncertain future regardless. I so hate it when things are too 'sugar coated', as I prefer the reality but not everyone can deal with the reality. Could you tell me who the hospital consultant is that is overseeing your dissertation? Can we speak at some point for reasons which I will explain later? Please could John pass on my details thanks?

Thank you all, I would like as many volunteers as possible with the various types. My time frame I would like for gathering the information is around the 4-6 week mark. If people come forward after that date it is not a problem. Thank you all again

Hi Martin if you contact me directly I can answer any questions ( John will pass on my deatils and he is aware of what I am aiming to do) but to answer some of the questions;

Nothing to do with the routemap and VUK and HU are aiding in getting volunteers.

it is at no cost to anyone apart from time given by volunteers and myself

Newcomers need to know the possible effects and outcomes - not ever patient will have happy endings ( so to speak) and people like myself have never been controlled and encounter secondary or third illnesses on top of what they have.

The booklet throughout will be overseen by a hospital consultant and where it will eventually be distributed ... Well we can only hope it will aid some how.

The purpose is to allow newcomers who know very little to have a patients perspective on the different type of illness and how the same diesase affects people differently. i believe this will help clarfiy what the consultants are telling patients and to allow the patient not to feel so alone or isolated.

I hope this helps to clarify a few things for you and others that may have the same questions.

i would like all vascuilities diseases to be present in the booklet if i could. I would like your input also thank you

I am happy to send my experience

Gma61 in reply to anthony01

Thank you

happy to help i am a fellow pataint with wg


Julesd and John Mills have kindly contacted me privately and I'm more than reassured this is a worthwhile and valuable publication. It wasn't my intent to sound sceptical but I was concerned it might dilute the efforts of V-UK but I'm more than happy this will be something positive for all concerned.

I'm quite sure it will be a huge task to put together such a document to include the whole of the vasculitides and hope we can work with our respective consultants to make them ultimately aware of it, & of course, V-UK. Without doubt, the patients are the greatest ambassadors and sources of information when it comes to educating the medical fraternity!

@ juled. Would it be possible to design & distribute a simple form for collecting your information?

Best wishes.


Gma61 in reply to Hidden

Thank you very much for your comments and reassurance to anyone who may wish to help. I will design a simple form this evening and post later tonight thank you again and to all those people that have offered their help so far, julesd

I have hypersensitivity/urticarial vasculitis - it was my first diagnosis before going on to be diagnosed with SLE/Sjogren's/Raynaud's/coeliac over the following2 years

I'd be happy to participate.

It would be my pleasure to partake with you on all accounts. I am a cryoglobulinemia advocate and patient. allianceforcryo.org. If you need more input form the cryo community I and will ask within my community.

Thank you for your work. Marianne -laughingnana

I think one of the main issues that should be addressed is that because vasculitis mimics other ailments it can be present 2 or more years before diagnosis. Unknowingly GPs just treat the mimiced symptom(s) so they must be made aware of all early symptoms that could be a precurser to vasculitis. For instance, approximately 2 years before diagnosis (CSS) I just felt tingling in my fingers when driving. Once I'd stopped driving it disappeared and because it was so minor I ignored it. CSS is also related to late onset asthma so it would seem appropriate for such suffers to have routine ANCA blood tests with the asthma check and likewise with any 'listed' mimic type symptoms.

You've had my contribution now; good luck with what will be a very worthwhile output. I remember the forlorn and lost feeling I had after diagnosis, and the hours spent researching for this weird disease feeling incredible alone and afraid. Hopefully balanced, but uplifting, with patient's explaining sysmptoms, not text books or medical papers. From what I've learnt in a short period of time, it doesn't matter what vasculitide you suffer with, there appears no such thing as text book case.

Gma61 in reply to Wellsie

Thank you and to everyone that had offered help thank you and like Wellise has said there is no text-book case. Thanks again


I am happy to share my experience with WG/GPA if it could be of any help...I was lost in the wilderness for a few years without appropriate treatment because this disease was not understood by my then Consultant. I am now being appropriately treated thanks to advice from John Mills.

Hi Sheila thank you, I have sent a message to your inbox. Thank you Jules


I have started a Blog elainekay42.blogspot.co.uk/ which is detailing my sons battle with UV/CNS? since it all started back in 2011.

Have a look to see if it can be of any use to you?


Gma61 in reply to Elainekay42

Elaine thank you very much

I will help if you still need people, I am 30 and I have had WG for 12 years :-)

Gma61 in reply to Lucylucciano

yes please

I have Churg Strauss syndrome and was diagnosed just over a year ago. I'm happy to help and have passed my details to John. Please Email me with any form you want me to fill in or I can just answer the questions you posted?

Gma61 in reply to Katie18

thank you i have sent you a message across


I would very much appreciate this type of publication. Having recently been diagnosed with Rheumatoid Vasculitis (also have RA and Sjogren's) the documentation I've found about it doesn't make things very clear. Would love to find out more about it . But don't know enough at the moment to make any useful contribution. Good luck with this venture.

Dear Gma61,

There is 'Vasculitis Roadmap' available, via Vasculitis UK, that sets out, in very great detail, all (well as much as any of us know) the information there is on Vasculitis/Auto-immune Disease. Their Address is 'jandsmills@btinternet.com' I'm, quite sure that they will be happy to correspond on these issues.

Good luck with your PhD, maybe you could let us have a copy, when you publish it?

Kind regards Andrew T

I would be happy to help, diagnosed with WG in April 2017.

After 6 years, have you met your goals and objectives with a Patient Handbook?

Dear Gma61,

I'm AndrewT, I have several- about five- 'Overlapping' Forms/ Strains of Vasculitis. I had a Kidney Transplant, in July 2013. The Vasculitis attacked my Brain, Heart and Kidneys. I now live in Supported Living. I carry out, my own Personal Care, but need 'Support' when away from home.

Clearly you CAN 'talk' to John, who does 'know' me, or- if you prefer you can Private Message me. I am already Involved, with Research, via Addenbrooke's Hospital and, I believe, Oxford University.

Please DO feel free to contact me further, if I can be of any Assistance. (I'm always Happy To Help)


Gma61 in reply to AndrewT

Thank you and i too am with Adds. I havent done much work as i have been poorly with it everywhere.

But i will take you up on this thank you

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