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BRITTLE ASTHMA

ok, I may be new, but; I hope this is'nt a stupid question. I have never had asthma before, what causes us to have brittle asthma?

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That's the big question, I don't think anyone really knows the answer!

For some, food or other allergies play a part.

There are several studies ongoing at the moment to look at different genes that might be involved too.

Emily H

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I looked it up on the internet. Brittle asthma basically means our asthma is very unstable. Once you find the triggers and if possible eliminate the cause you might be able to make it laess brittle. Apparently only 2000 people have brittle asthma in the country. I think this must be a big under-estimation!

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Actually suspect the estimate is not wrong. At the RBH they say true brittle asthma is very rare, difficult asthma which is how they descibe what most of us call brittle asthma is a lot less rare. I was told when I was at the RBH that elements of my asthma were brittle the rest was difficult. I think the major splatts which I get and are almost impossible to treat is the brittle bit. There are certainly 2 very different patterns to my attacks, so it makes sense to me. I was told Drs tend to over use the label brittle. From reading here and meeting people a lot of people who are told they have brittle asthma also have some under-lying other problem too which once treated makes a massive difference. I was told very few people leave the RBH with a diagnosis of brittle asthma.

Bex

ps please note: I am not commenting on anyones condition (expect my own) just telling you what one specialist centre says.

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I have to agree with Bex, plus, I am under RBH and their diagnosis of me is that I have one of the 13 or so types of Difficult Asthma that they have identified.

I nearly freaked when I was told I had brittle asthma, a year ago, I have always identified with the chronic/severe label, personally!

The mad variation I was experiencing in my PF plus huge, if not extreme diurnal dips led my previous Consultant to label me as brittle, plus I was never symptom free in spite of max meds etc.

Once I had been through the DAP at RBH and they had realised I needed Amino and not the enormous amounts of Pred, my asthma gained a level of control back that I really hadn't experienced before, plus I have had underlying COPD and Bronch factors diagnosed, which are defintiely not brittle asthma, or indeed asthma at all.

Like Bex said many people with so called brittle asthma turn out to have underlying breathing issues that definitiely aren't asthma, or even lung problems at all.

It should be the role of Respiratory Specialists to really delve deep into every possibility of one's respiratory problems, and then only if nothing else is found to be contributary, to give the brittle label, as let's face it, when you google it, the few bits of information you can find are actually pretty scary to say the least.

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I guess it's all a question of definitions really. Some respiratory consultants seem to call all asthma they can't control 'brittle', others avoid the phrase like the plague. Prof Ayres, who used to work at Heartlands, I think was the one that got the phrase into popular use (although it was apparently first used in 1977!) and he has coined strict definitions:

Type 1 brittle asthma: characterised by a maintained wide PEF variability (>40% diurnal variation for >50% of the time over a period of at least 150 days) despite considerable medical therapy including a dose of inhaled steroids of at least 1500 µg of beclomethasone (or equivalent)

Type 2 brittle asthma: characterised by sudden acute attacks occurring in less than three hours without an obvious trigger on a background of apparent normal airway function or well controlled asthma.

If you accept the Type I definition then I suspect a lot of people with difficult/severe/uncontrolled asthma might fit in to it. I'm guessing (but don't know) that what RBH call brittle is more like the rapid onset Type 2 attacks?

Just before Prof Ayres left Heartlands they changed the name of the clinic there to 'The Severe and Brittle Asthma Unit' and I remember he was at great pains to stress in the Newsletters that he didn't think of the brittles as being particularly 'worse' than the people labelled as severe asthma, only with slightly different problems.

I guess at the end of the day these are all just artifically defined labels that doctors have come up with, and whilst it might be helpful for the doctors to group us into different groups, we are all basically in the same boat, whether 'brittle', 'severe', 'difficult', 'extreme' 'chaotic' or just plain awkward!

I personally have sort of got used to thinking of myself as having brittle asthma; I suspect RBH might not agree although I do have very sudden onset crashes at times. I find the label useful on some occasions for explaining my condition to people, as it does seem to get across that this is different to the 'normal' well-controlled asthma in a way that 'severe asthma' might not.

I've been amused to see my clinic letters from my consultant, when my GP shows them to me - I seem to end up with a different diagnosis every time - one week it will be 'brittle asthma', next time 'severe asthma', next time 'chronic steroid-dependent asthma'. Oh, well, I guess as long as he keeps treating me I don't care what he calls it!

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My local hospital call Sean brittle and warn every shift of docs/nurses he can be very brittle. On the other hand RBH have used chronic, severe, steriod dependant. In the last 2 months on letters from RBH we have had.

1. difficult to treat asthma

2. severe difficult to treat asthma

3. Very severe difficult to treat asthma.

I am beginning to wonder what else could be put in front of difficult to treat maybe next time will be very very severe ?? ;-)

I've bee told at RBH that brittle is now described as difficult to treat, me and Sean just say he writes his own medical book and his asthma has its own rulebook!

Julie xx

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Ok i have to admit i saw the funny side of letter i recieved today,

Diagnosis: Severe asthma with sudden deterioation

How many more ways are there to describe asthma :)

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just bumping this up cos someone asked about definitions of brittle!

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I still think Joshua's my mum has ""extreme asthma"" is the best description I have heard ever!

Bex

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I agree Bex my local costa says im brittle but regional lung centre says im severe uncontrolled, have elements of brittle in my splats but not wholely, he agrees with RBH that is is a turn used too widely and like you said there are only a few tre brittle asthmatics,

Love Andrea xxxxx

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I have brittle elements certainly I fit the type 1 criteria type 2 not so sure about sudden attacks yes but they take an age to get under control, reading the type 2 criteria they seem to get control back pretty quickly. My TWIMC letter says brittle asthma but when explaining to people I use the term extreme it works better.

If you are needing to expain to a hotel or somewhere about chemicals or air frsheners don't use the word asthma word at all, they assume it is mild and IMHO won't take it seriously. I say I have sinclairs lung syndrome and they must not use any bleach based cleaners or air fresheners for 24 hours before I use the room, and have not any problems since I started doing this. When I was requesting the same cos of asthma it was joke, one hotel even tried to charge for having the room empty the day before despite admiting they were no where near full and the room was not booked to be used the day before anyway. Sinclair is the name of my cons at Torbay BTW.

Bex

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I like the 'sinclairs lung syndrome' idea. I've sometimes used the terms 'bronchial hypersensitivity' or 'reactive airways disease' in order to be taken seriously. Because the word asthma is in such common use, people do think it is trivial and easily dealt with. More impressive names work better.

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I agree that the term ‘brittle’ is misused. I have had docs suggesting my asthma is ‘quite brittle’ or has been ‘fairly brittle lately’ – which is utter rubbish, something like ‘quite brittle’ is an oxymoron IMHO. Yup, it is not particularly well controlled at the moment, but that is very far from it being uncontrollable, which is what my understanding of brittle is (either because despite best medical efforts it is still not controlled on max drugs, or still liable to sudden splatts).

But I also agree that the term ‘asthma’ is difficult, and really hard to get people to take seriously. I’ve had years and years of asthma that was well controlled with becotide and ventolin and very occasional course of pred. That is a world away from what I am dealing with now. Which in turn is completely different from asthma that results in regular ITU admissions/ventilation, requires subcut/oxygen etc, which I haven’t experienced and god willing never will! Not trying to demean anyone’s illness, this isn’t about who is ‘worse’, just saying that they are very, very different. Before the asthma went loopy I used to work as a volunteer for a big counselling organisation, and one of the things that was stressed was not to say ‘I understand’ because you don’t – everyone’s circumstances are unique, and tho you may be able to empathise, you can never KNOW what it is like for someone else, and I’ve found it really difficult when I have been struggling this last year, and have had comments like ‘can’t you just use your inhaler?’, or people thinking being in hospital is just a few nebs and out, rather than not having the breath to get from bed to commode, cause they are basing it on their expericence. Much as I hate labels, I think it could help so much having different names (like the one Bex has suggested!) just so people (inc medical profession, employers, and even for things like benefits) have a better idea.

Sorry, that is a bit of a rant. Must be feeling better!

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Hello!

I have sometimes use 'Severe chronic lung disease' and then let them ask about what it is and describe how severe and disabling 'brittle' asthma can be.

sometimes I just use 'asthma' but it all depends on who I speak to and the situation. Just saying brittle or chronic asthma doesn't always describe how severe it is and has in the past caused me problems - eg being walked over the Yorshire dales on a so called amble and ending up in ITU / HDU later that day !

I don't let it rule my life but I do emphasise the implications of it othewise it isn't taken seriously.

Chaotic asthma is another phrase I use too!

Regards type, My consultant says that you can have both types! chronic and accute! which fits my pattern.

There have been some suggestions that Brittle Asthma is a separate disease from asthma. I think it is different in the way the body reacts to the different drugs etc. eg tollerance, resistance etc. as well.

Tis a tricky one!

Kate

XXX

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I have also used chronic lung disease and reactive airway disease as at times i get sick of well meaning people saying ' oh i heard sean was in hospital is it JUST his asthma again' !!

I'm not sure which label sean fits into as his meds would label him severe but when he having good day he plays rugby which doesnt match severe. His attacks used to be slow onset over a period of couple days but in last year thats changed to rapid onset as well, either way he is very very slow to respond to all i.v's in hosp and is reliant on s/c .People are usually quite blase about asthma and its severity. I used to play down the severity of sean's asthma but since a 12yr old local boy died of asthma attack last may I make sure if seans in anyone elses care they know exactly how ill he can get. It now has the effect of scaring them which i'd like to avoid but to be honest as long as seans safe thats my main concern!

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Julie, it is about striking the balence. My kids are getting better about now but there was a time when I only had to cough or even set up for one of my regular nebs and they panicked. I don't blame them they have seen enough scarey things to make them paroniod. I think telling them just what to do, the TWIMC letter is, when to dial 999, and if it happens at football where to go to get help with the simple things like getting home havnig my car moved to somewhere secure etc. Of course is does not help that I go off so fast...

On the flip side they also sometimes forget I can't do some stuff. I think as family we are nearly there now but it has been hard so hard on the kids and I am so proud of them and the way they cope. Nicko has just done really well in his GCSE's despite the fact that the last 2 years I have been as unstable as 2 legged table. Josh is not well himself but he has been so brave about it all, Mike comes with me to A&E and stays with me, he has seen art-lines go in listened whilst they arrange ITU transfers and coped with calling home and my mum to keep them posted. Maddie bless her is at boarding school she feels very isolated when I go in and is scared everytime the phone the rings apparently that it is bad news. I don't know how they do it I really don't, I tell them all time how proud I am off them butI still sometimes feel they deserve better than me...

Bex

sorry that turned into mushy proud mama post

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The mushy mum post is fine, they sound like great kids who you are quite rightly very proud off :-) I think it is very easy to moan about kids when they bickering or making a mess or driving us mad with cries of im bored.

so its nice to read a postive post.

Please dont ever think yourr kids deserve better than you, they love you because you are a great mum. From what I have read on boards you are an inspirational person who still wants to enjoy life to the max despite chronic illness.

julie x

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Hi all,

Keep meaning to reply to this interesting discussion. So here I go.

I have a variety of different asthma labels.

The local chest clinic has defined my asthma as being severe atopic/brittle type 2 with mild COPD. I’ve always known about the ‘severe’ label, but only found out about the ‘brittle’ label via the word written on a blood test bit of paper, two years ago now.

As for the COPD label,- which I have always associated with a smoking status (I have never smoked) - this abbreviation appears on any sick note/Med 3 form, ( in itself a legal document on a scrappy bit of paper). Words always run like this: - unstable asthma/COPD. Confusing to say the least.

And career limiting.

There seems to be such a variety of descriptive and emotive adjectorial language used to define an asthmatic. It’s hardly surprising asthma isn’t given the ‘respect’ due by the media, public and yes even some of the medical profession, let alone other people’s understanding of this condition.

Even the respiratory consultants and professors use different definitions and language to describe the same or similar types of asthma.

Most importantly, the very people who suffer from asthma are confused and as a result are, at best, accused by doctors for none compliance of treatment, or, worst of all, utterly oblivious to the seriousness of their asthmatic condition and potential short term, as well as long term consequences.

So Rusco, - and hello by the way! - if you are still listening, and it's not a stupid question - ask your doctor to define ‘brittle’ asthma and what it means for you and the treatment you need.

I’m going to end on a positive note!

Came across a web ref link that gives a good resume of asthma and developments in treatments.

ttmed.com/respiratory/Text_...

Mia

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