Panacinar Emphysema

There are two main phenotypes of Emphysema

1 Centrilobular most commonly caused by smoking with genetics and air pollution having less effect

2 Panacinar most commonly found among the 3% with Alpha 1-Antitrypsin Deficiency

Both of these come under the common COPD umbrella most commonly labelled a smoking related condition and not worth any sympathy from the general public or the doctors who see COPD as self inflicted.

I have Panacinar Emphysema and Non Alcoholic Liver Disease both caused by Alpha 1-Antitrypsin Deficiency and having never smoked or drank I receive the same terrible attitude that public opinion has been educated with.

Patients with Lung Cancer that have smoked heavily are given far better understanding than non smoking COPD patient and I believe this is caused by the superior education and publicity provided by the groups involved with Lung Cancer.

Changing the public s opinion of COPD should be a priority for all who suffer now and in the future.

Ali x

38 Replies

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  • Certainly don't disagree with that. There is however the matter of funding and whether the damage is reversible. If not then it's classed as incurable and doesn't have quite the same panache. So no money put in to research for drugs to halt the progression and early diagnosis. regards Dozy

  • The funding that is found for Marie Curie and Macmillan nurses is something that should be available for COPD patients with equality of treatment across lung disease. I am not greatly interested in panache it is the social stigma that is applied to a commonly caused by smoking disease that angers me most.

    Ali

  • Oh flibberti sympathising not stigmatising is how I would like public opinion changed that is how funds can be taken away from a condition if the public are told the patients are unworthy of help.

    The same level of help extended to everyone with lung problems is music to my ears.

    Ali

  • Actually 22% of COPD occurs in never-smokers, see thelancet.com/journals/lanr...

  • [Quote] We identified individuals with COPD spirometrically; that is, as the ratio between forced expiratory volume in 1 s (FEV1) and forced vital capacity (FVC) under the lower limit of normal (LLN), excluding individuals with self-reported asthma. [/quote]

  • This is from an NHS document - info.wirral.nhs.uk/document...

    (on page 18)

    [Quote] 4.1.3 Diagnosed COPD patients and smoking status

    About 2409 (or 34%) patient with diagnosed COPD in Wirral are current smokers. Forty five percent are ex-smokers and about 20% have never smoked. . . . [/quote]

  • And only 20% of smokers get copd

  • Bad science saying smoking is the cause on that evidence 02Trees.

    Ali

  • True - i don't think the statistic I've mentioned means one thing or the other causally. It's always been known that not all smokers get copd. However you spin it, smoking is usually the main cause, with varied co-factors like genetic pre-disposition, pollution etc. But we also know some people with copd have never smoked… people like yourself with Alpha, those exposed to lots of passive smoke, occupation exposure etc etc.

    But people often want to put you into a box. I used to feel defensive around the stigma, but that stage passed a while back :)

  • In India it was found that 93% of COPD occurs in never-smokers, and instead is caused by indoor air pollution from the use of biomass fuels for cooking . . . indianexpress.com/news/indo...

    But in advanced nations around 80% of COPD occurs in smokers or ex-smokers (with the greater proportion in ex-smokers for some reason), demonstrating a clear causal effect.

    However, given that around 20% occurs in never-smokers it seems logical to assume that 20% of those 80% with a smoking history would have got COPD even if they had never smoked . . .

  • Sounds like the basis for another quiz question ;)

    And true - I've posted about India before but it also occurs in African countries as well, lack of decent ventilation plays a good part.

    When smoking is blamed as main cause we should probably preface the statement with "in the west".

    I didn't know incidence was higher in ex-smokers - do you know why? The health education used to be that if you stopped, your lungs would return to normal within 5 years. They know better now.

  • Interesting reading,Thanks x

  • If only we could get doctors to understand this stilltruckin they would not keep offering me help to stop smoking when I have never smoked and it is only a box they need to tick so that can say they have done something helpful.

    Ali

  • I want equal treatment for all lung conditions not the attitude that I have experienced which puts all COPD into the smokers not worthy of help or treatment group. This same public opinion is used throughout the NHS and DWP when withholding funds and resources.

    Hope of the medical profession separating personal prejudice is not something I have found evidence for in my long experience.

    Ali

  • With one doctor I went because I felt ill but my chest was not producing more than normal. When I got there the nurse called me in to give a water sample before I saw the doctor and that made me think water infection how wrong was I. The test was to see if I was smoking and not telling them about it because my lungs were getting worse faster than they should. When I asked why they were treating me this way I was offered tablets that would calm me down. Slap in the face and say calm down why do they do this if smoking is not important. Same when I had my gallbladder out the blood test was checking for cigarettes and they would not have done the operation if I had smoked its a label smokers lungs check if they still smoke.

    Ali

  • Welcome AlisonCS

    I change the public's opinion about many things every time I open my mouth :) ;)

    Seriously....

    I do explain to those who make such statements or query 'is it caused by smoking' just so they get a clearer understanding.

    I think if everyone with awareness about the illness can be bothered to explain it to persons when they enquire, it may help to change public opinion in quite a big way.

    Best BC

    For those unaware and would like to read more about Alpha1 check BLF's page here:

    blf.org.uk/conditions/detai...

  • Your help in changing public opinion and clearing the understanding is greatly appreciated BlakeyC there is so much work and so little time for it to be done if those who follow us are not to have the same fate as we have.

    Ali

  • Have to agree is load of toff there are those who smoke but dont take hard drugs then there are those who dont smoke who take drugs

    and on and on we could go.

    Then you have work ... But in this post no mention of pollution natrul or un-natural

    If you look at my pics of lung tissue you will see black spots .. even docs surgons dont know if its caused from work place or iner city polition or smoking

  • Part of my problem has been caused by working with carbon fibres for 15 years. Everyone is very quick to blame smoking.

  • Do you get fed up with the same blame game Suzy6 where they take an easy option.

    Ali

  • Yes I certainly do AlisonCS. Only good part the Consultant actually mentioned it in her letter to my Doctor. I think she was half convinced not smoking alone.

  • Brings up a very good point dazisnotsogood toffs taking drugs get a better public opinion than smokers because that is what spongers spend the benefit money on if you believe what is written.

    Educating public opinion that lung disease is not something that should have a social stigma is how I see the future improving for all..

    Ali

  • When I go to hospital and see the smokers huddled in little groups outside the doors with their nightwear on I know they are not welcome and public opinion is against them

    Ali

  • Read somewhere only 20% of smokers get COPD and that says smoking is not the whole story or everyone that had ever had even one fag would get sick. The stop smoking crowd are the ones that give smokers a bad name and have a go at obese ones for not eating healthy when the cheapest food is not healthy.

  • Already covered the bad science of blaming smoking with 02Trees and trying to stop smoking should not be an excuse for not giving equal treatment for all lung patients.

    Ali

  • Excuse me?? please note my reply to stilltruckin'. Smoking as a cause in our culture should be prefaced with "in the west". All kinds of smoke causes copd, not just cigarettes. My previous comment about only 20% of smokers was not intended to prove anything one way or the other about causation, so can hardly be labelled bad science, not sure where that came from. As someone who smoked comparatively little, I am far more interested in co-factors anyway.

    As i said in my reply above we know a minority of people with copd never smoked. When it arises I always explain that to people.

    If i were you, I would express your annoyance directly to your doctor and say it's an assumption which s/he should not be making, and if you still can't get through change your doctor. There are many excellent ones working from a patient-centred perspective who will treat you appropriately as an individual. However the main thing i would be worrying about is whether s/he is giving you proper treatment.

  • You are right there is anger that drives me when I want the way we are treat by doctors. I am on my 3rd GP and second practice because they want to treat me as an alcoholic chain smoker that is causing my own illness when if they read my notes they would not waste my time and theirs.

    Ali

  • my father never smoked and had copd ,i smoked and have COPD my brother a very heavy smoker still smokes 40 a day he doesn't have COPD ,the only difference ,as a child i had TB he didn't

  • It is the same myth that I was told by doctors that COPD was a smokers disease and even now I have proof that my Emphysema is not the type caused by smoking I still feel they do not believe there can be certain I am not secretly smoking as my lungs get worse.

    Ali

  • Put an advert out for shepherds in the NHS.

    Ali

  • I think there is a lot of bias in the medical profession concerning smoking. There seem to be lots of studies about smoking vs lung disease, but how many are there of lung disease vs childhood illnesses? Or lung disease vs pollution by area? Does it stem from the universities being a place where liberal idealism is pushed alongside the real teaching. There is a lot of it in many fields, mostly academic. Engineers and people working in the field or industry have to deal to much with reality for idealism to stick for long.

    breathe easy

    johnwr

  • Agree agree with everything said johnwr reality not rhetoric would help so many that are not included with keeping things as they are now.

    Ali

  • Hi johnwr.When i was a smoker i was invaribly asked if i had stopped smoking by the gp but he/she never asked me if i had stiopped driving my car.Yet every single i day i was helping to pollutute the urban space where i lived and worked.I no longer smoke or drive the driving went first.

  • I worked in the carpet trade for forty years and the incidence of COPD amongst my ex-workmates (those I am still in touch with) is quite high. Some, of course, were smokers but lots of them weren't. It would be interesting to find out if any studies have been carried out on the effects of working in the various fibre industries. As Suzy6 says, she worked with carbon fibre. I worked with carpet fibre. I also seem to remember a disease in the cotton spinning trade. (cotton lung?) I believe that a lot of COPD is caused by smoking but a lot of it certainly isn't.

    Bobby

  • Taking the easy way out and calling it all smoking. When Asthma is climbing as fast as air pollution they can not blame smoking for that because it has dropped right off. It is a fear of lawyers that keeps them away from calling it industrial injury when most commonly caused by smoking covers over that.

    Ali

  • I am a non smoker, although my father did and caused my bronchiectasis. The first question I was asked at the Brompton Hospital during my diagnosis: Have you ever smoked?

    However, I did receive all the help I could get, at the Brompton and with my consultant here in Whitstable. I had referral to the pulmonary nurse, the rehabilitation and physiotherapy. BUT, and it's a big one, you have to ask for it. If you don't say anything to the GP, she won't do it. My GP knew that all these were in place; but it's only when I asked, that she woke up and said, OH yes!!! I'll give you a referral!!!

    The bible says rightly: Ask and it shall be given to you.

    .

  • I did not have the first idea what I should ask for when first diagnosed it was only after a hospital stay that I saw a lung consultant and was told much more could be done to help me. I have changed my GP since and am not sure if referrals were not given through not knowing they could or money saving.

    So much more that can be done than stopping people smoking and sending them home with inhalers to find their own way of living with bad lungs.

    Ali

  • Can you make sure that referrals are made now by your new GP. It won't be evident to the that you wanted this from the other GP. so you have to establish this clearly and ask for a consultant specialist referral, a pulmonary nurse. At the pulmonary nurse, ask about pulmonary rehabilitation and a physiotherapist.

    Take note of this, so when you see your GP, you won't forget in the flow of the conversation. Your GP will make a record of this and, hopefully do the necessary referral to a consultant. have you moved, that you changed your GP? If so, you definitely want to set this in motion for your own sake.

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