Trying to make a difference

Trying to make a difference

Thanks for visiting my page.

My name is Neil and I turned 46 while on life support. I have Vasculitis.

Some of you will know me and some of you may even know my story; for those who don’t, please read and let’s get the word out there.

I have deliberately described my early symptoms at length as this disease is known as the “5 Doctor” disease. It is a disease which is not always picked up or recognised in time and yet can be tested so easily if that initial idea and test is performed.

It all started when I was feeling a little groggy in September / October 2015. The odd spate of tiredness, sore throat, slight pains in my back, a cold that just wouldn’t shift. Jobs undone in the house, low motivation and generally feeling unwell.

By Christmas and New Year my energy levels had really dropped, I thought I was just unfit or worn out as the winter went on. In January enough was enough, I visited my GP complaining that I thought I may have a kidney infection or even perhaps a kidney stone. I had random temperatures, not all the time at first but when they were there, they were high. These GP visits went on for 2 months.

By now I was having the worst night sweats imaginable. The pain was getting worse but it was so difficult to explain, they were random pains and aches all over my body at different times of the day. All I knew was that I was not myself. I would be asleep by 6pm, and awake in the night groaning in pain as I struggled to roll over or having to change our bed for the 4th time in one night. I continued to visit the GP’s, now almost weekly. Results were not showing anything in particular. “Maybe it’s a virus attacking your muscles?” “It may be flu, take bed rest and let’s see” My partner started telling me that I was losing weight, I had lost my appetite and struggled with day to day tasks like getting dressed, putting my socks on, and even walking down the stairs without sitting down for a rest halfway. Could this really be flu? I spent that week in bed but instead of feeling better, I felt weaker and weaker.

By the end of the week, I couldn’t find the strength to eat, to sit up or talk and now vomiting blood. Laid out on the sofa, my partner took me to A&E. My temperature was touching 40. Little did I know, on the 26th February 2016 that was the beginning of my journey.

I was admitted that night and spent the next 10days in Bedford Hospital having tests, a biopsy on my lungs and investigations. Having reached no conclusion and needing to wait for biopsy results I was discharged home but in no state to return to work. By now, I was losing weight, couldn’t find energy to get out of bed, sweats continued and I was in a lot of pain.

A week later I was readmitted into isolation in Bedford Hospital where I was then treated with suspected TB and possible Sarcoidosis. At this point I had a suspected stroke and on the 6th April a heart attack. Now doctors were becoming baffled. I was still an inpatient but they could not figure despite numerous biopsies and tests what was the cause of this deterioration. My feet had developed a deep purple rash.

Having breathing problems and an infection, on the 13th April I was taken to Bedford Intensive Care where I was induced into a coma and placed on life support. My lungs were failing, there were dangerously low levels of oxygen in my blood.

On the 14th April Bedford, Papworth and Leicester discussed my case. Leicester agreed to send their specialist Ecmo team and I was transferred on Ecmo to Leicester during the night. It was there and then Vasculitis was diagnosed.

I remained on life support and on Ecmo for 8 days. During this time was given Dialysis and Plasmapheresis, my kidneys were now failing, all of this unbeknown to me.

Thanks to the knowledge of the Leicester Ecmo and Intensive Care Team, my treatment for Vasculitis could begin. I was given Cyclophosphamide, a type of chemotherapy.

It took me a further 4 weeks to get to the stage where I was now responding to some treatments, able to stay off of ventilation and to work on being somewhat mobile. The Vasculitis, the Ecmo, the ventilation had left me in a state where I had to rebuild my muscles, to relearn how to sit, walk, feed myself and even hold a cup. It was a painful and emotional recovery but with determination on the 24th May, I returned home. I had lost some of my hearing, my sight had deteriorated and I need to gain the 4 stone I had lost.

Having received Cyclophosphamide, a concoction of steroids and antibiotics, painkillers and oral chemo I returned to work with Bovis Homes who had supported me and my family throughout and continue to do so.

That brings me to now. A relapse or should I say Plan B. The Vasculitis has appeared to be rearing again and under the Lister Hospital Team where my disease is understood as well as can be, I am receiving Rituximab with hope that this will attack the disease and keep it at bay. My case, my results and subsequent results are being offered to this much needed research.

As you can see, Vasculitis can do a lot of damage before it is discovered or diagnosed.

My ability to do tasks is harder than before; I get tired and still walk with a limp, I am still quite weak and in pain. However, I will be trekking up Snowdon with my team on my Birthday, my first anniversary of living with Vasculitis. Please help me help fund research and awareness through Vasculitis UK.

Thank you for reading my story. Neil

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

21 Replies

  • What a story, Neil. Thank you for sharing. What type of vasculitis have you been diagnosed with? Would you mind sharing your story on the VUK website? This is the link to give you an idea

    You have not posted your Just Giving link so thought I would post it for you if that's ok?

    Best Wishes Susan

  • Hi Susan

    I don't mind at all , all the help I can get and give so share as much as you like.and anyone that would like to share feel free. Ad I understand it iv got PR3 positive ANCA vasculitis. I still don't really understand it.


  • This means you most probably have Granulomatosis with Polyangiitis, ( GPA ) used to be called Wegeners Granulomatosis ( WG ) . My husband John was diagnosed 15 years ago , his story is very similar to yours.

  • I see iv seen it mentioned before . I'm still trying to put it all together . hope john is doing ok

  • It has been a very bumpy road, bit like a roller coaster ride, but yes he has and is doing well. Life is not the life we planned, it is very different, but certainly not worse and we have met and made so many new friends along the way, both patients and medical professionals.

  • Bless you both . you really do have to make the most of it. I'm still new to it all and not sure what installed for me . but I'll always put one foot in front and keep going the best I can .

  • As has already been said - what a story! With at least a fairly happy interim ending - you are here to tell it.

    What appals me above all to be honest though was your GP's action - or lack of it. Some years ago our joiner was telling me a story similar to the start of yours. He too had night sweats and his GP was saying "flu" and a load of other equally pathetic offerings. Andy told me about his wife being fed up with changing the bed a few times a night - and I told him to get to the doctor and demand to be referred as an emergency. When he got to A&E his feet didn't touch the floor - he was in the isolation unit in minutes. A diagnosis was made and he was already being treated for a bacterial infection that would have killed him left any longer. The boss and the students were stood round the bed and the boss asked the students what presented with night sweats - top of the list for them was cancer but he listed other options for them. And emphasised that any patient with night sweats, particularly the sort that soaked the bed in a male, should be investigated in hospital immediately. Not fobbed off with "it's probably flu".

    All the very best for the future. I do hope you have sent a copy of this to your GPs who obviously need some education as did our practice 22 years ago - because Andy wasn't the only patient they didn't react to in a timely way. Without the grace of god and some very speedy action by his colleagues at the hospital my husband would have died too. He had night sweats they ignored - a low peak flow and 3 failed antibiotic courses was "asthma" they decided, not the cancer it really was (not lung cancer by the way).

  • Thank you for sharing your story , funny how all the same symptoms keep getting missed (not funny)I think my GP won't miss it again . turns out I'm not the only one at the surgery that's has it . still I'm not going to blame anyone we got there in the end .just .

  • Very interesting that your friend is a joiner and has autoimmune disease.

  • No, Andy didn't have an autoimmune disorder, it was a bacterial infection that was affecting the heart. The link for the cases I mentioned and Neil were the ignoring of night sweats. Which apart from for ladies of a certain age should NEVER be dismissed as anything insignificant, especially "flu".

  • Thanks. yes I agree, should never be ignored absolutely, not even for ladies of a certain age 😊

  • Hi Neil,

    That's exactly how it happened for my husband, he has Wegener's Granulomatosis, or GPA as it is now known (so if doing any of your own research or just fact finding, then always check using both, that's still a must, as in medical terms it's title was only changed fairly recently so the crossover transaction is still under way in lots of ways) and his diary of symptoms and later symptoms and treatment path, etc., were almost identical to yours, but fortunately he was diagnosed soon after he got the purple rash on his feet & legs and has been left with problems with his lower legs especially if he's been sat down. We went through that changing of sheets 4 times a night routine, but he wasn't treated as kindly or correctly as you were from what you say. Early diagnosis and the correct treatment is vital with this disease as I'm sure you know. I have Wegener's Granulomatosis too, was diagnosed before my husband was. So when he was later diagnosed too (different hospital to me and yes our diagnosis was checked to ensure they were correct) it was a shock for us all including all the Doctors we've come across since when we tell them we both have it, as it's not contagious. They say we're the only husband & wife in the world known to have this same specific rare type of autoimmune disease. We both suffer differently in some ways but the same in others. So we have experience times 2 !

    A lot more is known about this and other autoimmune diseases now, there is a great deal out there now, more than there ever was if you care to look, which may be helpful to you, but others won't like you looking. It is no longer the disease it used to be and knowledge of it has grown massively. Just changing it's names and so cutting down on the number of groups it belongs to & by grouping lots of diseases under the same umbrella group means that statistics can be somewhat watered down and a little misleading, makes it look less rare. The medical profession seem to hate rare diseases. The challenge with research of this disease for any reason, personal or otherwise, is that it comes under so many different headings and under several different groups, possibly one of the reasons it's name was changed (apart from the supposedly dislike for it being named after a certain German doctor said to be linked to the Nazi's) and put into a larger group with others similar. But once you realise that you'll come across lots of research that is both interesting & can be very useful to you. Sadly, Forums can be very limited & challenging at times depending on your findings & opinions formed from that. Some people consider themselves to be experts when they're not. Best to check out the available facts/info and to make your own mind up. As your knowledge and experience of this disease increases you will be able to decide for yourself. You do what is best for you and form your own opinions based on the information you find. You will have a challenging time ahead of you.

    Great that you're managing to keep your job, as sadly that's not the case for everyone, but for those who can it can be so beneficial in lots of ways. Good to hear you're doing so well! 😊 PM me any time.

    Kind regards, Shirley Jones.

  • Thanks you story is very interesting, and I'm shocked to hear you and your husband have it ,saying that my partner is saying some thing I did last year . I'll keep an eye on her I thinks. Yes I am very lucky to have a company that's cares. I'm still finding my feet with this condition and have to remind myself life has changed ,but in determined to make the best of it as best I can. And that's why iv decided to raise as much as I can for research and awareness

    Well wish the pare of you all the best and we'll chat soon

  • Hi Neil, It's good that you remain positive, always helps to. Hope to chat soon, but not on here. Forums aren't always the best I've found. Speaking from experience I'm not a massive fan of forums and support groups so avoid them generally, as I know many others do too. I find them to be too blinkered for my liking, too unnecessarily controlling. They appeal to a certain type and I'm not that type. PM me by all means though, as I have lots of facts and other info to share. I've done lots of research for personal reasons (I always recommend you do your own), that has been invaluable to myself and others, and that has led me to a better understanding of the condition overall that we share. You take care, Kind regards, 😊

  • Hi wooddustaffected

    As far as I am aware separate statistics are kept on all the Vasculitis Variants. Certainly ANCA associated Vasculitis has a diagnostic code of its own that allows prevalence to be calculated and audit carried out to make sure that treatment is in line with BSR guidelines. There are also the Vasculitis registries such as UKIVAS ( which VUK help fund ) which collect incidence of specific Vasculitis variants and treatments. When VUK fund research grants ( over £200, 000 to date ) they have been given to research specific variants, not Vasculitis in general.

    I am happy to be corrected if I have got it wrong. Nice to see a post from you again.

  • Shirley, I do undertand and sympatise with your unusual circumstances, but you seem to be making thinly veiled disparaging remarks about this group and others. I'm sorry if you think that the people who administer this group are those who "consider themselves experts but are not" or are "blinkered and controlling". They certainly come from scientific/medical bacgrounds and have far more knowledge than most people using the forum - about all types of vasculitis and other rare auto-immune diseases. In terms of being blinkered & controlling, these groups are set up to offer peer support & exchange of knowledge, so we certainly don't allow individuals to dominate discussions or people to propagate their own pet theories. So we don't allow any religious views, promotion of non evidence-based remedies or promotion of the use of illegal substances.

    I know your particular hypothesis about wood dust being the cause of WG in both of your cases and that your husband worked in a wood-dust environment which was brought home on his clothese, thus affectng you, as was the case of mesiothelioma in the families of asbestos workers. There is ample evidence that the dust of certain types of wood is very highly dangerous, which is why today there is so much H&S ruling around ventilation and dust control in woodworking environments. I don't know if this might also apply to all woods but maybe to a lesser extent. Particle boards containg high levels of synthetic resins, which may be dangerous in certain circumstances. As you hypothesise, all wood contains embeded silica particles and there is some evidence of an association between silica & certain types of vasculitis. Unfortunately you tend to take a great deal of rather inconclusive evidence and put it together to fit your hypothesis. When doing a "literature search" based research study, you are supposed to look at ALL the published papers and give each piece a "weighting" according to its strength & reliability of evidence.

    Unless I totally misunderstand, the reason for your "research" is not about academic interest, but about gaining sufficient evidence to launch a compensation claim against your husband's former employer. However in order to do this you have to demonstrate that the evidence was freely available to the employer, who then failed to take adequate precautions.

    "Doctors do not like rare diseases". There are 7000 KNOWN rare diseases. No doctor can possibly know all the characteristics, signs and symptoms of all of those.

    Most are monogenic - caused by one or two "defective" genes. It makes sense to look at common factors so that they can be grouped and common factors found.

    Wegener's Granulomatosis (WG) is now called "Granulomatosis with Polyangiitis" - because for a medic, that is a descriptive term. Churg Strauss disease (CSS) is called "Eosinophilic Granulomatosis with Polyangiitis" because it is similar to GPA but the characteristic presence of eosinophils identifies it as different. GPA, EGPA and MPA (Microscopic Polyangiitis) are all "ANCA" types of vasculitis, but then there are two types of ANCA - cANCA (usually associated with GPA) & pANCA (MPA). People with EGPA may have either. The type of the disease suggests what treatment is most likely to be effective. None of the drugs used for treating vasculitis were developed for that purpose, but understanding and classifying different diseases makes it possible to identify which drugs, used for other more common diseases, might also work for a particular type of vasculitis.

    There is research into causes of vasculitis, but as our own polls indiscussion groups show, there are many suggested causes from infection or insect bite to stress. The medical consensus is that a cluster of genes coming together in some people makes them more susceptible to developing an auto-immune disease, but thit then needs an "evironmental" trigger or factor to set the disease going. Silica or wooddust might be among thos triggers or it may need more than one factor coming together.

    There are no conspiracies of silence of cover ups or attempts to confuse or conceal.

    It's a very complex picture and it is very difficult to collect hard evidence. The rare the disease, the less evidence there is available. This is why Vasculitis UK supports and sponsors the development of a unified linear database or at least the possibility that all the different databases should be able to "talk to each other".


  • John, There you go again. I find this stance of yours rather tiresome. No you clearly do not understand our very difficult circumstances, largely because you do not know it at all.

    Firstly, I never said what you are accusing me of. I did not say or make veiled disparaging remarks about this group, or 'that the people who administer this group are those who "consider themselves experts but are not" or are "blinkered and controlling". I did not say that, as well you know. You are the one who keeps commenting on me, as if you know me, when you do not, even on one occasion in a previous post Susan was very insistent that you had both met us at a support group meeting, despite me saying repeatedly that I had not. Again, I can confirm I have never attended any support group meeting. I have never met you in my life. It's not something that I do, as I say I'm not a fan.

    Why do you constantly insist on twisting my words? I was merely pointing out to someone who was quite new to all this to be careful that's all. Neil hasn't taken offence by anything that I said to him. I also said that it was my own opinion that I am not a fan generally of forums and support groups, but that was me clearly stating my own opinion speaking from experience generally. I certainly did not say that all were bad. Am I not entitled to state my opinion on such matters? Do you not allow that too? Is Neil not allowed to make up his own mind, which is all I ever suggest?

    So please stop doing this to me. I'm asking politely John, it has to stop, as you clearly are doing it to make it appear to others that I am a bad person with some kind of malicious intent, when that is clearly not the case.

    As for the name change, once again I did say that was 'one of the reasons', not the only one. I didn't go into further detail. I'm sure Neil and others really appreciate your more complex explanation. I didn't want to overwhelm someone with everything. I prefer for people to learn what they feel they need to know for themselves and to be there for them to turn to if they need to ask something.

    My comment about Doctors not liking rare diseases was something that has been said by Doctors that I have met, and was merely my attempt to keep it light and was said tongue in cheek so to speak, to be reassuring, as it can all seem so scary in the beginning, so sorry it was lost on you. Perhaps if you weren't always looking for the bad in me you would have got it perhaps.

    I wasn't actually speaking to you though, I was speaking specifically to Neil, sharing exact same experiences with him, to reassure him not you, so the conversation was aimed at him, his level of knowledge and his experiences not yours. Why did you butt in?

    Yes, once again, you have misunderstood my research. You constantly seem to wish to disparage me for doing it and want to imply to others in the group that I am not academically capable and want to suggest to others that I am just some imbecile who has just done some Google searches on the internet, which is totally incorrect. Trust me, although you are clearly not impressed, possibly because you do not know anything about me in reality and do not know me or my work well enough to be able to make any assessment of that, other eminent Doctors, Scientists, Professors and others from all over the world, are very impressed, and I have proof of that too. So please desist from this constant belittling of my efforts, just because you personally disagree with the subject matter. Why do you constantly want to put me down all the time? You don't do that with others I notice. You do not pick over everyone's else's shared views, opinions and experiences with a fine tooth comb commenting on them when you know little about them, so why me? Do you see me as a challenge? Trust me you have absolutely nothing I would want.

    You state... 'I know your particular hypothesis about wood dust being the cause of WG in both of your cases and that your husband worked in a wood-dust environment which was brought home on his clothese, thus affectng you, as was the case of mesiothelioma in the families of asbestos workers....' no you clearly don't, far from it, for reasons I will attempt to further explain below.

    Yes you misunderstand once again, my own research was never intended for the purposes of a compensation claim. How dare you belittle my efforts in that way. Was that really necessary? As you well know (but others new to this will not ) I began my research due to our very exceptional and rare circumstances, because those eminent in the field of Vasculitis and autoimmune diseases stated that with odds they set at 100 million to 1, of us both having WG, that it had not occurred by chance, that there had to be an environmental or occupational cause. To be clear so you do understand John, that was them that stated that not me before you jump down my throat once again. Now you disparage me for researching what that cause might be so that we could avoid it in future and stand a chance of our health improving perhaps. Anyone in our circumstances would do exactly what I have done.

    I was actually studying a Post Graduate Diploma at MSc level at University at the time my husband was diagnosed and later decided to include my research as my dissertation. So maybe I'm a little more intelligent than you would like to give me credit for in your tirades.

    Why you consider it wrong that anyone whose WG is caused by a work place exposure as ours is considered to be, and others that I know of that are currently going through legal processes (yes I have a basic qualification in Law too, are you going to hold that against me too?) should seek legal redress, is beyond me, that is up to their individual choice. It is not for anyone to judge them. We do not have an ongoing compensation case to be clear. No one should be ridiculed however, for making that choice. There are people out there who have had their lives devastated, can no longer work, who may lose their homes after losing jobs due to their WG, some have children to consider. They don't have your income. Why shouldn't they seek compensation for the harm caused to them due to the negligence of others? Good luck to them I say. I do not need you to quote the law at me. I perhaps understand it a little better than you do, if truth be told. You sometimes give people the wrong impression of the law without knowing an individuals circumstances, that's very wrong, one size does not fit all, only a qualified solicitor can advise on that.

    Actually you are wrong once again also about the wood dust statements that you make, once again quite belittling. Why? Again you speak about it as if you are some authority on the subject, including on our own very personal history of exposures, which you're clearly not. I have not said that merely wood dust has caused our WG, that's not the case at all, so please do not give anyone that impression. It's more what is in the dust (any respirable dust really) that is the problem, it's not solely about wood dust per se either, particulate size, etc., more what it contains and what wood composite boards are manufactured from and so on. No, I'm not just referring to their routine components, which again you don't seem clear on, it goes much further than that, it includes the 'recycling' of contaminated old wood, 'recycled' waste wood, extracted from construction and demolition wastes from the demolition of old buildings. One of my many concerns and campaigns to raise awareness with the public and regulatory authorities, out of concern for others, is concerning the 'recycling' of previously banned materials/chemicals/substances (previously banned from new building products because they are proven by fully peer reviewed research publications (yes John, have read many hundreds of peer reviewed research publications in my time, so fully understand what they are before you comment again) to cause cancers and other diseases) being 'recycled' (I use that term very loosely to be clear John) back into new building products with no mention on any MSDS, so no way of knowing exactly what contaminants, carcinogenic or otherwise, is going back into new building products or in what quantities (yes that includes asbestos, amongst others) so no way of protecting employees or residents also exposed to emissions. Yes I have researched the wood waste recycling industry & the wood composite board manufacturing industry too, and know many that are affected by it. Far more than most people ever have. Now I could go into a much longer account of why that is, which actually some on here may find very useful due to their own personal exposures and experiences, but they will be denied that now. Some may not but they don't have to read it. I'm not allowed to share my knowledge, my experience. Everyone should be encouraged to contribute, not just those you agree with or who agree with you, not be discouraged like this. That's not what running a group is all about speaking again from experience of that both in the voluntary and business sectors.

    You can't simply hold up your own very simple 'polls' based on a very limited few members in reality when you compare them to the actual scale of the issue/problem here with regards to the vast numbers with vasculitis & autoimmune diseases overall that are not members of this group, as any kind of evidence that the results you imply prove or even suggest anything are really only worthy of no more than a mention between members. Partly because to begin with you deter members such as myself from sharing our own views or experiences on anything other than what is regarded as the norm, by the way it's worded (not saying that's intentional to be clear, maybe just a naivety, who knows), these 'polls' to have any credibility as you like to suggest here, have to be based on more than these on here are. They have no scientific basis or meaning, they prove nothing in reality. Just a fun thing that some members may find interesting perhaps. Nothing wrong with that though. If that's what members like to take part in then that's up to them. I choose not to.

    Actually your knowledge of the current research & opinion on possible causes of autoimmune diseases, and the research that is available that has been undertaken by those far more able to do that than you or I, does seem to be behind the times somewhat, or perhaps influenced in some way. That's fine for you personally, but for myself it's not enough, I like to be thorough. We all have our own reasons for doing what we do. I prefer, as I always state, that if anyone has concerns about possible environmental or occupational exposures/causes for their WG or autoimmune disease, then it's best that they learn for themselves, to do their own research as believe me it is out there but not that easy to find in reality, that they learn for themselves what it's all about so that they can better understand and make informed choices for themselves, based on facts, not on anyone else's opinions. I'm always happy to help wherever possible but at times, like you, my time is limited, but I always do what I can.

    You were the one who brought certain issues into this not me. So it's okay for you to raise it but not me? If it upsets you so much why do you insist on repeating it, wrongly I should add?

    I do what I do out of genuine concern for others, because I genuinely care and hope that I can prevent others from suffering as both myself and my husband have in so many ways since both being diagnosed with what can be, certainly is for us, a terribly devastating, debilitating disease to suffer from and to deal with, including the many knock on effects on other aspects of our lives that having it causes, that many of us are subjected to that you may not be. We have all the problems times 2 !! You're very fortunate to have your wife, whom it is clear you are very appreciative of, to look after you and support you through your difficult times (and with running the group), but we do not have that luxury. When our WG flares up at the same time, we have no one to help us. Distressing to feel so helpless and at times so vulnerable but hopefully the fact that our very unique circumstances cause these problems is something that others can learn from, can benefit from in some way.

    So very unfair to raise these completely incorrect comments against me in this way, when you do not know me well enough to do that, and know even less, if anything at all, about what I do or why I do it. But they do go some way to proving some of mine I have to say. As for being able to 'talk to each other', clearly that is not the case at all.

  • Some familiar stories here. I was lucky, if such a term can be used with this dreadful condition, and my GP quickly stepped out of the routine of trying to fix a regular condition and, after a blood test, pointed me at a Rheumatologist who diagnosed my condition in 5 minutes. Until such time as the search for that elusive cure bears fruit efforts also have to go into the education of first, and possibly, second line medical personnel - trying to get them to step out of the continual 'fix what I know' routine and think about what else it could be - the earlier they do this the better for everyone (both patients and budgets!).

  • Neil these are the pages from the website discussing the UKIVAS registry as mentioned by Keyes and also other ongoing research projects you might like to catch up on.

    It makes very interesting reading Just follow these links

    Also there is a new alliance with other rare disease groups just been launched this last few weeks this link will give you some info.

    It is the BRitish Society of Rheumatology Autumn Conference in two weeks time and Vasculitis will be covered in some detail in the afternoon session. Some members of Vasculitis UK will be attending this conference as patient representatives.

    This is the link which explains - around 1000 doctors will attend this conference.

  • Hi Neil, Just to throw another wrench into all the possibilities, I have non-ANCA positive EGPA, so that's put me into an even rarer segment of the population. I'm sure you'll find that even if you know how to do research, it's tough to sort all of this out. [I'm a historian so have spent over 30 years doing various kinds of research]. I had never heard of eosinophils before getting sick! Nevertheless, from time to time new research emerges, which helps me to understand the impact of all this. I do think the new terminology helps as it is more specific, and in my case, is more specific. Also, I have found that it matters what country you are living in. I live in Canada, and near a major teaching hospital, so I have a different treatment that you in the UK. My daughter lives in the UK and I met someone there with EGPA, and his treatment seemed to focus more on a small dose of pred with support drug, rather than mine, which focuses on reducing pred completely [it took me 2 years to get off it] but the support drug is Cellcept.

    Best wishes, Karen

  • Hi Karens

    I'm seeing my consultant tomorrow so I may asks him what it is . and this is why I'm trying to rase funds to for more research and posable cure. As it stands I'm able to adjust my life to suit what I can't do anymore. As far as research, I'm not that good at that I'd get lost before I got ststed . but I do enjoy reading others .

    Anyway I hope you are well and chat soon


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