I have brittle asthma, this has been diagnosed and I see my consultant monthly. I can be really really well (as I am at the moment, swimming and doing normal stuff and really not looking ill at all) then without warning I plummet and I'm in Costa attached to all sorts. Today I was having a bit of an argument with my GP (heehee) because my university have said that as my asthma is so dangerous and unpredictable it's not safe for me to do some aspects of my course, anything that involves being away from the uni environment and instant access to hospital (I live pretty much next door to a major London teaching hospital). I really hate having these limits placed on me, especially as I'm feeling so well at the moment and just want to be treated like a normal student and be able to do what others take for granted. I know I push myself too hard at times but in many ways I would rather that than never find out what I am capable of. However, when I was trying to explain how I felt to my GP, she told me that I had to understand that I have very brittle asthma and that I'd had enough time in hospital to know what this meant and that with very brittle asthma I have to be a little wary and the uni have to think about my safety because things can change so rapidly.
My question is, is there actually such a diagnosis as 'very brittle asthma' or was my GP just trying to emphasis the point she was making?
honestly i feel as though people become so carefull and too aware of everything i started to do that till i snaped out of it one day and it was reading a pm that ginny sent me a while ago and re-reading what she said.. there are far worse conditions out there than asthma dont let it hold you back.
I think there is no such thing as brittle asthma - how good is your control? and what course exactly?
Firstly Confused, Yes, Brittle Asthma is a very real condition! It does exist but the name is very over used too by many a GP who flaps and labels anything uncontroled as brittle!
True brittle asthma is quite rare and is only really diagnosed by specialists chest cons and also at specialist asthma centres. (Do a search on the boards to find more on type one & two!)
Brittle asthma is Brittle full stop! Very Brittle could be type two like you describe. I am both just to be awkward and just use BA . Perhaps your GP was trying to emphasise how bad it is but even with BA you should not have to let it rule your like.
Look at what you can do and not what you cant and work around this.
Yes BA can be scarey but I would ask for the university to do a risk assessment on the activities you intend doing on the course and bring up disability. They may be able to provide support for you.
You then need to decice if various activities are safe for you to do.
You should not have to live your life within wheezing distance of an a&e. Get a very good protocol written up for emergencies in remote situations.
I carry lots of epipens, mu neb, some s/c bricanyl bolus ampouls and also in the UK O2. (Been off on field work, flown to the Falklands etc....)
Hi my Son has brittle asthma type 2, it is a constant struggle as he is an athlete to my horror. He is so good he runs for our town regularly, and may run for our county this year. I have to let him do this as it's his life, he is only 10 but sport is his life.He wants to try for a scholarship to a sports college. He goes under in minutes, he has lots of meds daily to try to prevent it but it still happens. I have been diagnosed with asthma and keep being told it is brittle. I am fine and then just crash within minutes, just as my Son does and get ill very quickly. We live 5 minutes from a hospital, and my Son has to be transported when stable to the specialist centre 80 miles away by ambulance.You know your limits, if you feel they are being unreasonable, tell them, but if in your heart you know they are making sense, you know what to do.It's your life and you only live once, but without your health it more difficult.What a dilemma!
Take care, let us know what happens
Kate
Trouble with being brittle like you have said sometimes we can be really well and doing everything but for others who know the other side of us they only see the Brittle and slap on restrictions on what we can and cannot do. Yes of course during our acute times we have be very careful but I also feel it should be up to us to us providing we prove that we are responsible to say when we are safe to take up certain activities. This can be very difficult for those who are in positions of responsibility like Universities, other places of education and employment and often leaves the likes of us who are very responsible about our health and welfare without. On a general level there are no right and wrong answers about being restricted, but I would always encourage the individual to be open with the powers that be and try and work through it, showing that you do have the knowledge and responsibility to make the right decision for yourself and for the sake of others.
And finally ""brittle"" well that depends on the day, sometimes I am very brittle so yes that does exist, but today I would describe myself as very pliable. As for GP Ratty I think she was just trying to make sure you understand, my poor consultant last time when he found out I was bouncing around the countryside with several dogs jokingly said I will bring my two around, with him throwing the gauntlet down said righty ho you know where I live. Poor devil shook his head, and your GP worries about you! I say Ratty providing you are well, enjoy life because you never know when the next blip is, and the blips aren't so bad when you have made the most of the good times.
Ratty,
I'm going to agree with the others, enjoy the good times, yes I do know all about brittle asthma and within a few mins go from being totally fine to needing medical help. You know your asthma and how you feel, if you think you can go out and about and the instant hospital access, does such a thing exist? Mobiles mean you or someone else can phone for an ambulance and they can get anywhere, air ambulance also an option. Also if you're on your own and unable to speak, maybe you can send a text, then search on here for the emergency sms. was originally aimed at the deaf and hard of hearing but doesn't have to be restricted to that group of users.
Hi Ratty
Sorry you are feeling so low and confused at the moment - I am going through the very same thing. My boyfriend is desperately trying to hammer home how bad my asthma is, and how I have to take it easy and carry my neb when I'm out etc, but it's really hard for me to accept, although I am having trouble walking alot nowadays.
Feel free to PM me - I obviously know your GP/cons/Uni very well so I'm here if you wanna offload. I am considering talking to my tutor at Uni with regards to me finding placements on my course difficult due to the horrid hours, but know all too well the wrath of Occy Health!!
Take care and hope things look up soon xx
Hi everyone,
I first wanted to say thanks for all your really quick replies and I'm really sorry if I've raised a controversial topic or upset anyone. This was absolutely never my intention, all I wanted was to understand the 'very' part of what my GP was saying actually more than the university's actions. I'm going to try and respond to everyone here rather than the PMs I've had, I hope this is okay, I just want to avoid any arguments with anyone as I really value the support I get here and I don't know if I'm misinterpreting what some of these messages have said.
Firstly, yes, there is a specific diagnosis of Brittle Asthma, but, as others have said, it's wildly over-diagnosed and used inappropriately. I believe my diagnosis has been made appropriately and I'm seen by one of the top specialists in the country. I understand what BA is and have come to understand what it means for me.
Secondly, I try to live my life despite this diagnosis but this doesn't mean that I don't have weepy or ""why me"" moments. It also doesn't mean that I act without thought or take unnecessary risks. I don't. I'm very very aware of my symptoms and take regular peak flow readings. I have a very detailed protocol and care plan in place which has been agreed by everyone involved in my case. Any change in symptoms or anything worrying and I'm either straight to the GP (because of my plan and needs they are all aware of me, receptionists included and I am seen immediately - I did kinda deteriorate on them once in the waiting room and that was enough to make them take note!!), in contact with my respiratory team or off to hospital; I have a patient specific protocol with the ambulance service and yes, I use the text service too. I have had too many scary moments to even think of doing anything that would put me at risk or make things difficult for anyone accompanying me.
I am doing a lot and pushing myself at the moment, but I do also know my limits. The trouble I have is that I am fiercely independent and used to being very active before my asthma became difficult. I used to climb and go mountain walking for charity, I was preparing to do the 3 peaks challenge but I've got to accept that that's probably beyond me. But that doesn't mean I won't do other things and won't try to see where my limits are and if things have improved. But equally, if I need to rest, I'll rest and I won't do things against medical advice (I was gutted to find out you can't scuba dive if you have asthma as I've always wanted to try this - but I wouldn't put myself at risk by doing it against medical advice).
I do appreciate the position my university is in and I do appreciate the support they are giving me. I just feel that this has been agreed by non-medical people with limited input from my specialists when my consultant has already said that he's happy for me to partake in specific activities. It just feels too much like the university is trying to cover themselves. They're worried about me doing anything off-campus or attending events at other universities where, if something did happen (although I wouldn't be asking to go if I was feeing at all unstable) there may be some come back on them. I think this is all the more difficult for me (and makes it seem like it is more about covering their back) because they're not batting an eyelid at me going away on holiday to Australia for three weeks (with my consultant's agreement, someone to support me, and a strict protocol before anyone asks!!)- it seems like that's okay because if something happens there, well it's not their fault.
I should have explained, when I said argument with my GP, I meant that in a humorous way. I have a very good relationship with my GP, she sees me weekly to monitor me and we're quite able to have a disagreement (she's far too good at seeing both sides of an argument and presenting the other case!) without it being detrimental to the GP-Patient relationship.
Sorry, this has turned into a very long ramble. I think I'm trying to get some of these things clear in my head. I guess in summary I'm saying I do understand and appreciate why the university have acted as they have, but I do feel that their limits are not as flexible as they need to be given how changeable my condition is. I'm not doing anything risky and would never do anything to put myself in danger. I am pushing myself, but only within acceptable limits and keeping to my written plans.
I really hope that clears some things up and I'm sorry for the confusion.
Sorry Ratty, the misunderstanding was in part due to a pm I sent Confused last month. We all have different coping strategies and I was writing about how I drew inspiration from others in similar or different situations during dark times with severe asthma - along the lines of if other people could cope then I really needed to pull myself together. Hope that's okay.
ratty i think ur gp was using the word ""very"" to emphasise the asthma you have and how serious it is , tho for certain we cannot be sure unless you ask her to clarify. i hate the word brittle and dont use it cringe when i hear it used to describe me. i use ""bad asthmatic"" and my resp team call it difficult asthma. my gp just shrugs and says im a nitemare. now im told i have neutrophillic asthma this is fun at a and e. as it stumps the junior and know it all dr's.
Yes we all know our own asthma well my gp says i can pick up small changes that lead to attacks even before the become clinically apparent but still the little devil can catch us out when least expected. so this would be why the university and dr would like some sort of medical facility near by for these little episodes...
yes they are covering themselves but as an employer they legally got to do it. ask yourself this if they stated that you can continue the course but with these recommendations or leave the course as its unsuitable for your asthma what would you choose.... not that im saying this will happen but may help to accept the decision better
My experience with my daughter being diagnosed brittle asthma seems to be a bit different from most others. It took many years of very frequent hospital and I.C.U. admissions before we heard the phrase "" brittle"". How ever when we came down to Heartlands from Glasgow My daughter was given a different name for her asthma by Prof. Ayres. he told us she had ""severe unclassified asthma"". Whatever the label both my daughter and I were well aware of her condition and on good days she was out and about and on bad days she stayed around the house. Sadly as we all aware Asthma is life threatening and I think that is why some G.P's get a bit twitchy. My daughter could go off very quickly with-in about 5 minutes on a good day. I would just say to take care and live life to the full for you but try not to go beyond it. Keep well and good luck with your course. LIZ x
I'm not denying that brittle asthma exists- I partly take that statement back!
I feel as though there is a new pattern of it being loosely used. My doctor thinks my asthma is brittle and i don't think it is at all. i classify brittle as having to be admitted into hospital frequently i've not been admitted. it annoys me when doctor's have to classify something. its good for a doctor to make patient stop and realise their severity but when my doctor did i was drifting into depression- which is when ginny and a few others helped me snap out of it.
Classification of illnesses can be damaging and make people feel different. asthma is asthma everyone should be taking it seriously at all levels.
When doctors use the term 'brittle asthma' they mean that the asthma can change from being apparently well controlled to being poorly controlled in a short space of time.
This means that the person with asthma may change from feeling relatively well to having quite severe difficulty breathing very rapidly.
People with brittle asthma also tend to be those who have relatively frequent asthma attacks, and in between acute attacks may have ongoing symptoms such as coughing and wheezing which may require quite large doses of medication to keep them under control.
The 2005 Oxford Textbook of Medicine distinguishes type 1 brittle asthma by ""persistent daily chaotic variability in peak flow (usually greater than 40 per cent diurnal variation in PEFR more than 50 per cent of the time)"", while type 2 is identified by ""sporadic sudden falls in PEFR against a background of usually well-controlled asthma with normal or near normal lung function"". In both types, patients are subject to recurrent, severe attacks. The cardinal symptoms of an asthma attack are shortness of breath (dyspnea), wheezing, and chest tightness. Individuals with type 1 suffer chronic attacks in spite of ongoing medical therapy, while those with type 2 experience sudden, acute and even potentially life-threatening attacks even though otherwise their asthma seems well managed.
When first defined by Margaret Turner-Warwick in 1977, the term brittle asthma was used specifically to describe type 1, but as studies into the phenotype were conducted the second type was also distinguished. The condition is rare. 1999's Difficult Asthma estimates a prevalence of approximately .05% brittle asthma sufferers among the asthmatic population. Though found in all ages, it is most commonly found in individuals between the ages of 18 and 55; it is present in both sexes, though type 1 has been diagnosed in three times as many women as men. Hospitalization is more frequent for type 1 than type 2.
Don't think u need an admission to be labelled ""brittle"" confused I was able to manage the Attacks at home without seeing the dr.til 2 years ago. I have build off symptoms over days and weeks where steriods and nebs become less effective cue a trip to a and e As chest very tight and breathing fast and times when well then suddenly bang asthma attack and cue another trip. Despite this I'm on a large amount of meds with little control tho I hate the term it was used for years to describe my asthma til recent changes in my chest have changed the classification again... Ps good description woody
Hi with my own experience with all my multiple flare ups i don't think the moment my doctor, asthma nurse and hospital doctor had all said brittle asthma and told me to keep a detailed dairy of all changes did me any good. everyone's allergies are likely to change day to day depending on where you are and if its pollen season. i personally feel like the moment it was labeled i felt different and weak and became paranoid about preventing an attack and panicked when i did as so fixed on the severity of it. i don't intend to offend anyone at all the way i see it that everyone's asthma is different. my asthma is extremely similar to copd which is what doctor is concerned about - but ive got myself into a 'get up and get on with it' mode as im sick of my asthma controlling me or making me depressed and most importantly stopping me from doing what i want to.
im not sure if anyone else feels the same way but extra classifications didnt help me fix anything it just aided the asthma take over.
Everyone goes thro the grief process when given upsetting news and diagnosis of an illness confused. Denial/ doubt, bargaining, and ultimately acceptance. Through acceptance of my illness it allowed me to know why my asthma has been so bad and now dismisses the claim
of non compliance of medication. When people are diagnosed with asthma or brittle asthma it gives explantions as to why they have had there symptoms.
Seeing Red
If your consultant has done tests, and seen you have asthma attacks over a couple of months/years and diagnoses you with Brittle Asthma then you must take there word!
There is so a thing as Brittle Asthma! It is very rare, but think of it this way if you did not know about asthma UK forum would you know of any one else with it?
I personally would not! So that shows how rare it is.
Only time your should question it is if a GP or A and E doctor says it upon only seeing you once and doing no tests! (by tests i do not mean peakflow)
PLumie
I've been described as 'very brittle' on a few occasions and I don't find it a useful term myself personally even though I know what the doctors are getting at, it feels when they say 'very brittle' like they mean that you are difficult to treat or you can have full blown severe asthma attacks with little warning.
Ratty I personally think your GP described it that way to you to ensure you took it as seriously as they do.
simi x
I've really created some problems with this thread and I'm really sorry.
I'm NOT denying the existence or BA or my diagnosis. I was just interested in the addition of 'very' and what this meant.
I'm not being silly or taking unnecessary risks. But this doesn't mean that I just accept limits when they're not coming from medical specialists. I am very aware of my asthma and my symptoms and having had several life-threatening attacks, I wouldn't do anything to put myself or others at risk. I am questioning my uni because I am feeling relatively well at the moment and know what I can cope with. I'm not trying to prove anything to anyone, not even myself, I just want the opportunity to do what I know I am capable of and what I know and feel I am safe to do. I do not want my opportunities to be limited by a diagnosis and assumptions about this rather than an assessment of me as a person and what I am capable of.
ratty you didnt do anything wrong.
I think this a good debate. I've just been modifying my life too much too. I pushed my professional qualification off till next year as the doctors where clowning around and causing my flare ups (this is what lead me to join AUK as i needed to swot up on what meds were out there) the doctors drove me crazy but now i have a new gp who i trust and follow her advice.
Simi you hit the nail on the head. Thats how i felt when my old gp would not step up when i was really bad 'oh its looking like you have brittle asthma' and i'd sit there and think no that not my definition i thinks its brittle when your too sick and cant work or play with kids or leave the house and have frequent trips to a&e.
there are so many names and variations to describe a persons asthma i think gp's need to redefine which ones they frequently use.
gussypoo, im not in denial just sick of being sick had to do a blood test to rule everything else out as my manic hyperventilation makes me feel faint latley and im slightly venting frustration today.
Confused I didn't mean to imply u where in denial. I was listing it as a stage of Grief. if anything I would say you where in acceptance and now gettin on with ur life...
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Brittle asthma battle
Severe asthma, brittle asthma 
Brittle asthma
