Its so true especially the quotes of what people say about asthma!!
I've been ambulanced out of college a good few times in a very critical condition and the other day someone dislocated their knee and a person in my class was like 'I know they called an ambulance for you but you weren't that bad!! I mean you didn't go on a stretcher or anything did you?'
She didnt even see me having the attack and I did go out on a stretcher...I could hardly move!!
People don't have enough knowledge of how serious asthma actually is!!!
but haven't taken my medications and i know i should, i stopped playing Football (soccer) as i thought i was gonna collapse one day but nowadays i started taking them again and hopefully return to the Football pitch soon
Failure to take prescribed asthma meds is bad news!!
Hi
Your message was very true and i think not only do others not realise how serious asthma is but neither do some of us asthmatics.
I have frequently failed to take medication on a regular basis and it was brought home to me this year how serious that can be when i suffered a severe and life threatening anaphylactic reaction during which i had to be resuscitated.
Failing to take regular asthma meds left my asthma unstable and the combination of that and an allergen nearly proved fatal.
Failing to take prescribed asthma meds is bad news anyway whether you are prone to anaphylactic reactions or not.
I am glad to still be here and have learnt my lesson.
PInky x
pinky x
What message do you think we need to get across to change the perception about asthma? Our Users & Carers Forum met in Birmingham on Saturday (why do trains never work on weekends?) and suggested we need to tell people that asthma still kills.
I think the understanding of asthma by the general public is very poor. The perception is that it is something you carry a blue inhaler for and that makes everything ok. THe inhaler is not even viewed as medicine by some parents i know.
Even as a parent of three asthmatic children the little amount of information I have been given by my Gp medical professionals or hospital consultant is ridiculous.I realise it is important not to panic parents but they need to know how bad things can be and what to look out for. I am a brittle asthmatic therefore the assumption is I know how to deal with my childrens asthma. Everyone is different and I had enough knowledge to know there were questions I needed to ask and now each child has a management plan. If that has been assumed about me it must be assumed about other parents who have someone in the family with asthma.There is no education about allergies, avoiding triggers or stepping treatment up and down to avoid big crashes.
The understanding in schools is very very poor again because there are so many children with inhalers that are fine most of the time teachers through well intentioned ignorance in my experience become very blase(? if thats the word!)
A number of times i have picked my children up and they have been put to rest in the quiet corner when really what they needed was ventolin but at age 4 you can't always articulate your needs.
Some time ago the assumption was if you have asthma you couldn't do anyything and parents should keep an asthmatic child wrapped up in cotton wool. Education put emphaisis on how you can live a normal life with the treatments available. Unfortunately I think the balance has now tipped too far in the other direction, maybe we need a few stories on hospital dramas/soaps to get the message across.
I had a tape sent to me many many years ago by the precursor to AUK of how it sounded to be inside the lungs and describing an asthma attack and how it feels.
I played it at school and it effectively scared my teachers. Is something like this included in the schools pack to let them use it in science lessons?
There is no easy answer hence the need for this forum and AUK
Keep up the good work.
hi marmite i cudnt agree more to be honest! Wen i was i a kid i was a severe asthmatic too much was placed on the knowledge my parents had as my dad was a chesty child! However my parents did wrap me in cotton wool protecting me from anythin that cud pos trigger my asthma to flare up.
I fought back wit independence and conquered all 3 duke of edinburgh awards tough as it was it proved to those around me i wasnt so delicate i needed that protection.
Its now very unfortunatly moved to the opposite extreme. My boss is totally ignorant to the severity of my asthma and in the interview asked me wot brittle asthma meant? I told him it meant i often had very severe asthma attacks needin hospital admission and treatment and that i hav a lot of different triggers which can make it worse! Honesty was the best policy at the time and i got the job but since ive been locked in a battle of wills wit a manager who thinks i 'overexaggerate my symptoms' and hav 'conned the med profession in to keepin me in hospital!' he is now tryin to terminate my employment thro this as ive been in hospital wit only a 6.5wk gap at home since feb!
We've definatly hit the blatently ignorant phase of community in general's asthma awareness. I agree about the video too marmite-i watched one at school too n it scared my teachers and school friends into their overprotective mode but this coupled wit other info we hav tday shud encourage better awareness!
Well said marmite. Hope u n the wee ones are ok and stayin warm n well! Xxxx
It's obvious and perfectly understandable to me that Asthma UK's main message must be that asthma can, in most cases, be controlled and does not have to prevent people with asthma achieving what they want in life. But while that positive message is important and nobody wants to scare people needlessly,I think people mustn't lose sight of the fact that, especially if not cared for properly, asthma can and does take lives, sometimes in cases where people just did not perceive themselves to be at risk.
Perhaps it's worth looking at what other countries do. I know from family living in Australia that the National Asthma Council there publishes an annual audit of mortality, accompanied each year by a press release. This year's one is here - nationalasthma.org.au/html/... - and addresses a possible upwards trend in asthma mortality in the ageing population. I agonise over the balance between properly informing people of risk and needlessly alarming them but comments such those Neil reported in his blog reinforce to me the need to make people aware that asthma can take lives if not taken seriously.
I also can't agree more to how true this is. I am mum to 3 asthmatics. One aged 11 and very very mild. Then I have 4 year old twins who aren't so fortunate. We have been under the care of the local hospital and at the beginning of last year they were taken off their preventers, given only ventolin and discharged. Unfortunately we had onyl learnt how to deal with the attacks they had already experienced. We had no idea how to recognise worening symptoms, or what these symptoms are. We had no literature.
Last august one of our twins had a massive asthma attack, causing a cardiac and respiratory arrest. Thankfully I had arrived at the hospital with him 5 minutes earlier and this occured as he was given a neb. He was saved. We were told had he not been at the hospital, it may have been a different story.
After this I made sure I was as educated as possible about asthma. When I found this site I was relieved, but also devastated. I could have prevented that attack becoming so serious. All the signs were there but I had no idea what I was looking for. I thought that was just how asthmatic children were. I would also not have alowed him to be discharged from hospital 5 days earlier with sats of 94%
We now have a wonderful asthma nurse. I have now learnt at the hospital appoinments I have to know what to say to get the best treatment.
Many people, even medical professionals are totally unaware of how serious asthma is, and how unpredictable it can be. They see the inhaler as the cure, but it's really not that simple is it.
Well actually it is for my 11 year old! He has never had an actual attack, he just gets a cough and for many people thats what they think asthma is.
I'm hoping our experience doesn't scare anybody, as what happened to us would probably have been prevented if we knew what we were doing.
We are lucky we were givena second chance to get it right.
In terms of the general public, who are unaffected by asthma - they don't see it when it gets bad. My boys can run around in the childrens ward, sometimes in between nebs. On returning to pre school, they don't look ill and I have given up trying to explain how ill they actually can get!
I'm not sure what can be done to raise awareness really, although I do think that more should be done to help parents and relatives of asthmatics.
I have had may people question me in the past, and still today about how serious asthma can be. All people often see is the little blue inhaler and they don't see the day to day struggle we have if we have severe chronic / difficult / brittle asthma etc. I used to hide away for a neb but now I don't care who sees me having a neb. (it is better now it is a quiet one.)
I even got to the stage of refilling my s/c infront of relatives to emphasise the severity of my asthma. I also understand how someone who is relatively well controlled can have a severe attack. I too have severe accute attacks too and have taken to describing them to selected people as a bit like anaphylaxis and then they begin to understand how quick I can deteriorate.
Slow deterioration can be serious too as you don't realise sometimes how much downhill you are going.
Also some people think that when you have been in hospital and are home that everything is OK and back to normal. It can take weeks to get over a severe attack and some of us never get a break and some of us struggle each day with symptoms.
I would like AUK to get the message over but not over terrify people with mortality stats but perhaps that is what is needed for the general public and even health care professionals etc.
We get adverts about heart attacks and mortality, why not asthma? Perhaps because it affects everyone regardless of age that there is some sensitivity about informing people with the real truth.
It has nearly finnished me off on a few occasions........
Have just read the blog re didn't realise asthma was that serious.....
People do not realise how it makes you feel (like you have just run the marathon 10 times), the annoying thing is too some do not want to know.....
I work with a colleague who has no idea what is like or what can trigger me off.
Perfume being one of the things, it was so bad in the office I had to change rooms just to get away from it. My chest tightens, wheezy, coughing etc.,etc., they never bothered to come out to see if I was ok.
I have never experienced this ignorance in a workplace before, as my last couple of jobs were great with me.
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