British Lung Foundation
34,236 members41,629 posts

When are they going to treat the disease and not just the symptoms ?????

Hi Everyone

In my spare time I study COPD on an academic level. I have read 100's of reaserch papers and reports regarding the disease and I must say I am terribly dissapointed.

Both with the reaserch into the disease. The drugs for COPD as you are aware do nothing to treat the actual disease itself. Effectively its like someone having Acne and being given make up to cover it up, not treat the underlying skin problem. The drugs that treat ONLY the symptoms of COPD have not really changed in 30 years although the pharmaceutical companies every couple of years announce a new treatment. ITs not ! its the old treat for symptoms ONLY tweaked. The drugs we all take are either LAMA OR LABA or Combo's off both which open up our airways and are long acting bronchodilators of 12 hours or 24 hours respectively.

I am sorry to say, I see no research going on in different areas that will lead to a cure ie: looking a turning off the inflamation process to stop the destruction of the Aveoli, looking at the stem cells that are damaged in the large and small airways during the process. From a pharmaceutical perspective the reason is that COPD is the second most expsensive illness to treat with the multitude of drugs we all need. Why would they want to cure the Money machine ???

The BLF which do a great job and support us all, again looking at the research they have given grants for all relate to treating the symptoms and not a cure. I will point out I am not mocking, just mearley stating my observations.

We all hope for the future, some medical breakthrough will happen, but other than tweaking the old sympton relieving drugs for the last 30 years nothing has happend to date.

More pressure needs to be placed in the appropriate areas in order for us all to have a glimmer of hope in living with this horrible illness.

Sorry if I have upset or offended anyone as I know thing of late on here have not been a party but, I had to get this of my chest (no pun intended)

Justin

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I agree. The nearest they get to a cure is stem cell research but that seems to have gone stale of late.

I know it's not a cure but the new coil idea looks interesting.

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Agree with you on this one Justin. Unfortunately I also believe that some research studies are also cash cows, replicating data already done to death, pun also intended!

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Totally agree, i think they will come up with something in the not to distant future, but a bit to late for most of us. Xx

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I agree with you completely and have been saying so for last 10 years .The first biggest money maker is the armament industry the second is the pharmaceutical industries .I did read once how much they made out of COPD products alone but have forgotten but I know it was in the hundreds of millions also the industry also say they are not there to find a cure to anything

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Justin you hit the nail on the head when you mentioned money...they wouldn't make so much money out of us if they stopped the disease at the start.

The pharmaceutical companies are businesses they dont care about people they care about making money.....

There is a court case being prepared in America to take a pharmaceutical company to court for selling a drug for years world wide as an effective antidepressant.

Before they started selling it research studies showed it had little of no effect compared to a placebo yet the company ignored those findings and still put it on the market which has made millions

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Jay - looking at it from a different angle (and not wanting to be the devils advocate because if a cure can be found ..all well and good :D ) But when you have COPD (which I don't have so maybe talking rubbish :P ) whether self inflicted or hereditary, is it not the case that the damage has been done to the lungs, which is irreversible and all you can do is try and limit the damage or speed of deterioration. ? Once the damage is done the only thing is to replace or cut out the damaged area ? But unfortunately there are not enough replacement parts :P

It's just a different angle on things as I always think sometimes we get blinkered with views, so it opens a debate. And I am totally open and respect other peoples views

I often ask my consultants questions where they have either given me a direct answer or they have also said 'well that's a question I've never been asked before and they go away to try and find out the answer - Food for thought :D

Plumbob

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Hey Plumbob, less of the "self-inflicted" please! Hereditory or self-inflicted is not an appropriate opposition when talking about copd.

Remember that the state was giving away cigarettes during both world wars to calm soldiers' nerves; its not so long ago that advertising was targeted at smokers with its association of glamour to keep them smoking and making money through taxes for the government; and there are many people with copd never smoked (and don't have A1A either) and contracted copd through work based or environmental pollution.

Calling copd self-inflicted just reinforces stigma and plays into the hands of those who would say because we supposedly brought it on ourselves we aren't worthy of research which would bring about a cure.

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No disrespect meant but totally agree with what O2 says x

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My apologise I never meant it to offend and I agree with your comments on smoking it was publicly promoted and encouraged. I smoked myself, it's just smoking unknown to the smokers caused the horrible disease .... I would never condemn or judge anyone on their decisions they make everyone has a choice.

Once again apologies if I have offended anyone

Plumbob

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Lord love us Plumbob we all know you didn`t mean to offend ! Families do disagree on a point sometimes. We`re like a family we don`t argue - we debate. No-one should ever feel unable to disagree in a friendly debate. You take care, Sheila x

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Well put Sheila :)

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i was really bothered by the previous statement(self inflicted). i was just diagnosed with emphysema. i worked in a plastic factiry for years and my emphysema was brought on by inhailing chemicals. i have been struggling with chronic coughing and wheezing and shortness of breath for a year. been to doctors and missed diagnoised , with bronchitus 3 times. been fed antibiotics and steriods, everytime. lung and chest xrays always turn out gtreat. finally ended in hospital . ct scan revealed the emphysema. mild emphysema, but still scared and dont know what to expect. all that to say thank you, for educating people about different ways to get this. 

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Smoking is blamed too much - do we remember when there was smog over all the cities and we had to go to smokeless fuel - I breathed that - all the exhaust fumes I breath - yet lets face it they can hardly ban transport because we need to eat.

Don't get me wrong I do believe smoking is a problem but it is not the only thing harmful to our lungs.

All the cleaning chemicals we have used - garden weed and feed - dust from road works.

good debate plumbob :)

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I completely agree with you eyes. I have had allergy related asthma since childhood (now 55...oops 56 on the 19th). I was bought up with coal fires and walking through fog/smog so thick you could hardly see your hand in front of you. All these fancy household cleaners and 'smellers' they sell, don't help. All the vehicles on the road! Air cons!..I won't go on because it is the environment we live live in and I guess the ozone is closer to us than we at first thought.

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Hi Flibberti

I agree there is research taking place however this is all based from what I have seen on, treatment of the disease not in anyway related to curing the disease.

Cure based studies are non-exsistent I appreciate this probably also the case for the other diseases you have mentioned also.

This is also confirmed by the leading professor in my opinion the world on COPD Peter Barnes, so much so he opened up his own lab to start researching for a cure. Low and behold they found an interesting molecule and get bought out by a large Pharma company and I have heard nothing since.

On a larger Scale COPD is the 4th biggest Killer in the world, almost the same as all cancers combined but, in comparison has around 1% of the amount of cancer reaserch there is going on.

Just does not add up to me.

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I don't think Bob was being judgemental either. I think you make a good point Bob that the damage to the lungs has already been done and at present, the damage is irreversible. Hopefully there will be cures for future generations.

I am surprised flib that the trials for bronchiectasis/aspergillosis number 10/2. Until a few years ago I don't believe there had been any trials for about 20 years specifically for bronch but I may be wrong.

Respiratory is just not generally considered the 'sexy' side of medicine and does not attract the same funding as some diseases.

Cystic fibrosis, quite rightly, does attract funding from many sources. When you think when I was little CFers didn't live beyond childhood and now there are many adult CF units thankfully both national and international. You would think as CF is genetic, as is PCD bronch a cure would have been more likely. My point is medication and treatments for CF, despite much research is in the main treating the symptoms and it has taken years to get this far.

cfmedicine.com/history/inde...

We have so much to thank our CF brothers and sisters for from a medication point of view.

Let's hope research improves for all of us in the future.

cx

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Well maybe i was too harsh, and Im sure Bob didn't mean it to be judgmental flibberti. World wide it definitely isn't self-inflicted, think of women cooking in tribal communities on wood burning stoves with no ventilation whose cultures don't allow them to smoke. There are many here who have copd and haven't smoked and if i was one of them i wouldn't feel too good about people saying my condition was self-inflicted.

I was a fairly small smoker myself, quit age 40, and building work dust and photographic chemicals in poorly ventilated darkrooms also played a part along with the smoking.

I think the language used to describe things plays a part in determining their accepted meaning. Like most stereotypes there will be some truth in it but that doesn't mean the stereotype should go unquestioned. And as someone who has the condition, i would ideally like some say in how it is defined.

Just my opinion and we may have to agree to disagree. No disrespect intended to Bob who I'm sure intended no harm - more a general comment.

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No disrespect taken O2 - it's just interpretation of my comment, because when I said self inflicted I actually didn't mention smoking. As you stated above its entering spaces which are (unknowingly to you ) harmful. Breathing in dangerous pollutants , dust chemicals etc. I know have been in those situations specifically in the building industry. That's why areas of my lungs are dying off as well as having an aggressive fibrosis and asbestosis and still only in my mid 50's.

Take care - Plumbob

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Cheers Plumbob. Thanks for clarification and you take care too :)

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My final sentence may well be rubbish but there's got to be some reason why copd is a cinderella in the research stakes.

You could say that leaving any condition untreated (by that i mean just the symptoms, not a cure) would make more profit for Big Pharma, but other conditions get far more research.

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Flibberti - I think you have describe what I was trying to say perfectly I would never judge people or life styles without at least knowing them for a while

Cheers Plumbob

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Just adding to the debate Plumbob you mention whether copd is "self inflicted or hereditary" Unfortunately regardless of what the general public might be lead to believe its not quite so clear cut. The point I'm touching on is the "self inflicted" theory. Don't get me wrong no one hates cigarettes more than I do BUT if we got copd / emphysema just from smoking then all smokers would get it but they don't. Therefore there is more to the process than that simple explanation. Last time I looked 20 % of smokers get copd. Why is that? What other process is taking place? Suz x

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Yes 20 % of smokers get

yet 90% of copders were smokers

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the point I believe is that only 20% of smokers gets COPD regardless of how that 20% is broken down. :)

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Good points Suz xx

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HI Justin,

This is so disappointing, but not surprising due to reasons others have already pointed out. I have never smoked a cigarette in my life, but yet have copd. Even the consultant was doubtful I had it, until it was shown in tests, and she was intent on going down other roads. Unfortunately, its all about money, and its all too easy to blame it on smokers and being self inflicted. It isn't though, but we all realise smoking does hasten the progress of it. There has to be other causes of it, as Suz points out, but while the pharmaceutical companies are bankrolling it in with the manufacturing of various inhalers, then they have no interest in finding out a prevention and cure.

Good luck with all your research,

hugs from Huggs xxx :)

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I agree with you totally Justin. I'm not sure that the stories about them hiding cures for cancer etc... just to make more money, are true. We sick people are constantly reminded of what a drain we are on the NHS so, you would think they would be desperate to find a cure. That's just my opinion on it although, I am constantly berated by family and friends for being naive so, it probably doesn't count for nothing. Lol.

Nevertheless, the lack of progress on finding a cure is very disheartening.

I'm thinking of trying the vitimin A supplement, as mentioned by a member on here although, the fear of causing myself yet more ill health has been putting me off starting it, I am still going to give it a try. xx

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I know how you feel.

I ve just been looking at reviews on Amazon.

Someone who sounded very in the know on it gave 2 Stars for the swanson bottle. Given what they see

On i.u /mg conversion and

absorbtion person reckoned an 8 inch carrot would deliver twice as much

I d prefer a capsule any day

over 8 inches of carrot.

I doubt vit A would pose any problems

I wish you all the best.

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More money is needed to be spent on research but it gets spent elsewhere and not enough to go around for Lung diseases. Pete did used to smoke but was told that Sarcoidosis had nothing to do with smoking. He now has COPD too with all its complications. Maybe education is also the way forward but I don't know as I am the carer not the one with the breathing problems. I do know that an awful lot more needs to be done. Onward and upward hopefully my friends. xxx

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I'm another one of those people who never smoked and yet from age 16/17, my lungs have been steadily declining. I lived in an unpolluted part of the country, was well nourished and feverishly active but all that seemed to count for nothing. Lung disease is not necessarily hereditary or self inflicted. Sometimes, just like life, it's pretty randomn.

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erj.ersjournals.com/content...

Quote:

ABSTRACT: The aim of the present study was to measure age-specific prevalence of airflow obstruction in Switzerland in smokers and never-smokers using pulmonary function tests and respiratory symptoms from 6,126 subjects participating in the Swiss Cohort Study on Air Pollution and Lung Diseases in Adults. . . .

. . . Never-smokers constituted 29.3% of subjects with airflow obstruction. Never-smokers with airflow obstruction were younger, more likely to be male and reported asthma more frequently than obstructive smokers. Obstructive smokers and never-smokers had similar level of symptoms and quality of life impairment. . . .'

---------------------------------------------------------------------------------------------------------------------

And come to think of it - Logically, if 29% of COPDers are never-smokers then 29% of the 71% of COPDers who smoke(d) would have suffered from COPD even if they'd never smoked. Therefore 29 + (71*29/100) = about 50% of COPD has a cause other than smoking . . .

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I do agree with what you are saying but it is not just COPD that is not being treated, I have an unexplained rash that keeps appearing so now I am on long term anti viral tablets. On the COPD front (my hubby is the suffer) he suddenly developed a severe anaphylactic allergy which only happened when he had an exacerbation. We were talking to his physio one day and she wondered if it was food, couldn't get tested by the NHS so we paid and found that it was cow's milk and pineapple. So my take on your thoughts are the NHS would rather have paramedic sent to our address 3 times in a week when he is poorly and has an attack, together with taking up the valuable time of the doctors in A&E rather than find the reason and deal with it - he hasn't had an attack in a year since changing diet.

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When the pharmaceutical company's go bust!!! Or enough people to stand up and say "we don't want a MASK anymore ,get to the underlining problems and start to care about people ,without the attachment of money being the main issue. Dominated by negative power, to keep the hospitals full and people I'll that's what they do. If there a problem you have and it does not generate enough money you cannot get help.So what is wrong with society!????? It's what it's based on corruption and fear!!amongst other neg.things.

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Is it really in the best interest of a large amount of people to find a cure? Imagine all the loss the pharmaceutical industry would suffer, job loss, shareholder profit, not so much need for very highly paid GPs, etc etc. No profit in cure!

Apply the same to cancer.

This is all big business!

Annieosb

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If you're disappointed in the treatment and research for COPD try bronchiectasis. A government decision was taken to put any available money into COPD ( which I agree is more treating the symptoms than looking for a cure). This meant that any money (scant anyway) which had been available for bronchiectasis was cut off. Drug companies lost interest in drugs for us and concentrate on COPD. there is currently reaesrch going on into a COPD drug which is using bronchiectasis patients as a control because the medic in charge is sure that the drug would help us but we would be denied it because it would only be licensed for COPD. Treatment and research is flawed and discriminatory and there is nobody with the authority or bravery to sort it out.

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Agree with most of the comments on this post, most lung conditions are treated not only with the same drugs and treatment, but very little headway in prevention or cure has been made over the years. It is still approached on a treat symptom basis only in my view, most of the inhalers use the same basic drugs, just like the blood pressure drugs and arthritis treatments. It is true stem cell implant is probably the way forward for many chronic illnesses in the future, but whether research will continue in this area, or the big if funds are available is another matter and will no doubt be of little use to us. But it might save future generations, from suffering. One can only hope.

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Very interesting posts. I too am a never smoker, and after 40 plus years of lung disease, the medics never believe me when I say I have never smoked. My dad died of Cor pulmanol but I am told that it can't be an inherited illness as both parents have to have had the disease. Who knows? Not the experts and definitely not me.

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So infuriating when the medics don't believe you Sukee. That would drive me crazy.

What do they mean by inherited illness? do they mean alpha-1-antitrypsin? Have you had a blood test for that? You probably know but its genetic, caused by a missing enzyme. Often when younger people get copd that's why they've got it. You've been dealing with this for ages and I'm probably just sticking my oar in uselessly but thought i'd ask.

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Thank you for your interest. I was told that cor pulmanol can be an inherited disease but not worth testing me as both parents have to carry the gene. I was 16 when I was eventually diagnosed having always had a bad chest. I was given sun Ray treatment as a child and a lobectomy at 18. It is only this last year that I have been struggling more than usual. On inhalers now, and diagnosis of COPD verified although asthma medication has proved the most helpful. I bet you wished you had' t asked now, sorry for going on

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On the contrary sukee, i don't reply if I'm not interested. Ever since my own copd diagnosis, lung conditions have interested me. As you probably know cor pulmonale is the enlargement of the heart's right ventricle which affects its functioning. It is common with more advanced copd patients so doesn't have to be inherited though maybe your medics mean if you have that separately to copd. Ive never heard about the possibility of inheriting it, so something learnt there.

But you've obviously had so much more to deal with than i know about, so much to deal with over your whole life. What a struggle and how frustrating that they won't believe you never smoked :(

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My dad supposedly had emphysema, the heart problem only recognised at post mortem. Chronic bronchitis was listed as a secondary reason for his death (aged only 50). I only found this information 8 years ago, after my mum's death. Interestingly (for me anyway)my brother was diagnosed with asbestosis about 15 years ago. He too had always had a bad chest and had Sun Ray treatment at the same time as me, although he hated it and used to run away from the clinic. Sadly he did smoke for 25 years but gave up 25 years ago. He is still doing quite well at the moment, strangely we both use the same inhalers, trying to keep it in the family

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Wow, that is quite a family history sukee. I hope your brother continues to do well and that you keep as well as possible. All the best :)

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Medical research is very expensive, and drug companies need to get returns on it to stay in business. If we think that no-one is researching the area most important to us, we should set up a charitable fund to raise the money for research. As the fund would be in the control of the people responsible for administering it, they would be able to choose to support research that will investigate the area we want. This might be done as a dedicated fund through BLF, or as an independent charitable fund.

There are many of us with this condition, and even those with limited income would probably be able to afford £1 a year. If we've been waiting 10 years, we could calculate: 5000 patients x £1 per year x 10 years = £50,000 - even without other fund raising.

Is anyone else interested in this idea?

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I saw a vintage spiometer on ebay in working order for 60 dollars. Huge things but they did the same job. I think they go back about 100 years.

I live in rural Australia. A neighbour of fifty years of age died last weak. Cancer had got to his lungs and pneumonia set in. It was only diagnosed a week before. He was undiagnosed copd probably. No cure would have helped him in time for that. Early diagnosis is what is critical I believe. How much trouble is a spirometry test?make sure everyone gets one by 25. And instead of them allowing us to actually smoke at school, we could have been educated about it.

Sean has his funeral on Monday. He was a struggler. Its hard for jobs around here, and through the entirety of adult life for many. Stress, poverty and lung disease go hand in hand so often. But everyone has spoken of Sean, despite his obvious failing in the eyes of the law, as a loving and gentle individual.

Our lives are so similar: age, irish ancestry; even physical characteristics. He has given me courage to not let self pity take control any more.

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I'm sure you must have reading the article ncbi.nlm.nih.gov/pmc/articl... which I must admit i didn't understand fully but as this was written in 2011 all seems to have gone quiet ..... Is it a case of watch this space? Is there hope for us in the near future? Guess the answer is how long is a piece of string. In the meantime we'll all still be using our inhalers and those less fortunate using oxygen. Hope you all have a breath easy weekend. 😃

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thank you for the link it is not the one I had read but very interesting thank you xx

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Your welcome.

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Great Post By the way.

I have RLD and PH and from what you have written is so true they are a profit making organisation so a cure is not in their interests.

My PH is controlled by drugs that have been found to help other conditions but there is very little research as "The numbers do not add up"

We do have cures for Small Pox because of research from someone that wanted to find a cure? We need bodies like BLF and worldwide Governments to research cures as part of the conditions of funding? My Opinion.

Be Well

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I agree with what you say and do find the medical profession seem very complacent regarding our disease - viz. you will never get better just have to learn to cope better until of course the day you can't. There is however some research I have come across that is looking into stem cells and apparent genetic damage in some of them that correlates with having COPD (sorry cannot remember where I saw it but if I find it again will post it here) so maybe one day there will be a way to repair or replace these damaged stem cells and cure us - who knows but think it will be way too late for me. Thank you for your post and reminding us not to just sit back and take it. xxx

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Hi, I've had bronchiectasis most of my 64 years. My specialist told me it was caused by measles. My mum said I had a cough that wasn't clearing up and the doctor kept giving me linctus. I guess there weren't antibiotics around much then. Hence permanently damaged lungs.

Re research - a friend who has asthma asked his friend who works for a large pharmaceutical company why they hadn't found a cure. He was told that they didn't want to find a cure.

Also there are lots of articles on the Internet regarding cures for cancer where laboratories have been closed down and people put in prison for promoting their cures.

Good on you Justin for researching into cures. I myself am always looking for ways to help me manage my symptoms. I know the lungs are permanently damaged but there must be alternative natural ways to keep these dratted chest infections at bay. Some years ago I was on the merry go round of continuous antibiotics and it was quite scary. After trying lots of complimentary treatments I'm now quite happy with my regime; the most helpful being nebulising with garlic (allicin liquid).

Let's all keep searching :-)

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This is not a surprise to me. I try to go alternative, yet this proves too expensive to continue. So I resort to the old saying...'better the devil you know....'.

Whether I like it or not, my soul is sold to the pharma companies.

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Never....all the while it's based on stupidity and money.

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You I agree with you Justin, it is the same with many diseases, meds just help us cope and by golly we do need them....!

Only wish, like everyone on here, a cure can be found. I for one know that if I had not smoked I probably would not have COPD, if only we knew, we would not have started.

Take care

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Hi Justin

I am not at all offended. I totally agree with you. I have severe COPD and have been given the usual inhalers and am on oxygen. I had to stop using the reliever inhaler as it gave me palpitations and a very high pulse rate. When I mentioned this to my COPD

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Hi Justin

I am not offended at all and totally agree with you. I have severe COPD and am on various inhalers and oxygen. The reliever inhaler actually made me more breathless, and gave me the shakes, and a very high pulse rate. The one I exchanged for was even worse. I think mostly, the medics are embarrassed and just come out with the party response to this baffling horrendous illness. Of course if they found a cure for COPD tomorrow, the major drug companies would lose a fortune.

Regards.

Malinka

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I was diagnosed of COPD in July 2014. I was on Albuterol Nebs and levalbuterol to ease the situation as i constantly go out of breath when talking or when walking, I was adviced for Lung Volume reduction surgery (LVRS) because my both upper lobes of the lungs were affected, i was making preparation for this surgery when a friend of mine told me about a traditional herbal doctor called doctor Abumere who prepares herbal medicine to cure all kind of diseases including COPD disease, When i contacted Dr Abumere his email and bought the herbal medicine I received the herbal medicine through courier service in 3days, when i received this herbal medicine i used it as prescribed and was totally cured of COPD within 18-20 days of usage, he is able to cure any kinds of disease such as 1. Diarrheal Diseases,2. HERPES 1/2,3. CANCER,4. ALS (Lou Gehrig’s disease),5. Herpatitis B,6.chronic pancreatitis,7.Emphysema,8.COPD (Chronic Obstructive Pulmonary Disease),9.asthma,10.Acute angle-closure Glaucoma,11.CHRONIC PANCREATITIS,12. Preterm Birth contact Dr Abumere via his email: abumereherbalcentre@gmail.com.

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I think you make a good point about medical science not addressing the root causes of our diseases but I'm hopeful that a change in that situation is on the horizon. Not an immediate horizon, I'm afraid, but if I were a betting man (and a hell of a lot younger) I'd bet that this situation will change in the next 20-40 years. The problem is the pulmonary system is just so damn complex. You've got biochemistry, the nervous system, cellular biology, molecular activity, all the way down to our genes, all involved in making the system work and all susceptible to breaking down in myriad ways. Not an easy problem to solve. I think ultimately the answer will be found in gene therapy and regenerative medicine, but those technologies I think are decades away yet. In the meantime, there are many startups working on new technologies, things like deadening the nerves that cause bronchoconstriction (see Holaira) or destroying the goblet cells that overproduce mucus (Google CSA Medical, Inc.). Granted those are still technologies in their infancy, and therapies that address the symptoms and not the causes, but the mere existence of these companies shows that there are efforts underway to find new ways to treat these diseases. There's lots of money to be made by whoever comes up with something new and effective. Unfortunately the testing and approval process is very slow. But still, I see reason for hope.

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I am from USA, I was diagnosed of Emphysema (COPD) in 2015 and I have tried all possible means to get cured, i even visited pulmonologist but all to no avail, until i saw a post in a health forum about a herbal doctor from Africa who prepare herbal medicine to cure all kind of diseases including Emphysema, at first i doubted if it was real but decided to give it a try, when i contacted this herbal doctor via his email he sent me the Emphysema herbal medicine through courier service, when i received this herbal medicine, he gave me step by instructions on how to apply it, when i applied it as instructed i was totally cured of this deadly disease within 12-14 days of usage, if you are suffering of this diseases you can as well Contact this great herbal doctor via his email abumereherbalcentre@gmail.com

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Hi there. I thought it was just me who was annoyed by the lack of not just medicinal research but new ideas for treating with lung disease. I have bronchiectasis and 6 years ago was told I was lucky that they had found it early, but when I asked what could be done to slow down its progression they just stared at me as though I was mad!

What is the point of early diagnosis if nothing can be done?

Since then I have watched with a mixture of horror and disbelief my condition progressing and am absolutely helpless.

I am following a few patients who have had stem cell therapy in the states with reported good results, and hold on to this as hope that I at least can try something as the disease progresses.

With Bronchiectasis the bronchial tube lose their elasticity and will eventually collapse, trapping mucus and thus repeated bouts of infections.

Someone did post that research was being done on bronchial stents which can open up the airways. but I have not found any research on this.

Bronchiectasis is much rarer than COPD although it does come under obstructive airway disease . Video assisted lobectomy has reported excellent results but that depends on how much of the lung is diseased. I guess as it is rare we will be behind in the search for a cure.

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I agree, to be diagnosed early usually means at a younger age, which in turn just means longer to progress. We can stop smoking and exercise but we will still end up in the later stages of the disease as has happened to so many on here. All this ' you can stay at the same stage' and' progression goes down to normal rate' is absolutely rubbish

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As someone living with Asthma, Bronchiectasis ‘and’ COPD, there are both things I agree and disagree with in this thread.

When I was diagnosed with COPD at the ripe old age of 37, I was told by my consultant that whilst being a smoker for 20 years certainly wouldn’t have helped, that wasn’t actually the cause.

I’ve had asthma since childhood, and for a period of around 5-7 years in my late teens - mid 20’s, I was hospitalised maybe 3 or 4 times a year, every year, for a week or more each time, with asthma attacks. At one point when I was 18, one of the attacks was so severe, the Doctor in the hospital said this one thing to me that will never leave me - “I don’t know how you’re still alive...” Yep, at 18 I literally very nearly died from an asthma attack.

Then in December of 2004, when I was just 28, I spent 3 weeks in hospital with jaundice and liver problems, only to be rushed back in on Boxing Day, a couple days after my release, with Pneumonia.

In 2013, 9 years later, I went through another spate of asthma attacks and this time they exacerbated, and I was off work for 8 weeks at a time.

The consultant at the time said it was these constant asthma attacks and the Pneumonia which caused the damage to my lungs and set me up to spend the rest of my life with COPD. The Bronchiectasis I only found out about via my GP a year later.

So mine is neither self inflicted, nor hereditary. I was just...... unlucky.

Would I like there to be a cure? Of course. Do I think there will ever be a cure? No.

It’s impossible to cure the incurable, and it’s a fools errand to think otherwise. Once the damage is done to your lungs, however that damage is done, it can’t be reversed.

Sure, you can have a lung transplant if you’re a serious enough case. That’ll fix it. But otherwise, no.

So as far as the research goes, I’m happy to continue volunteering for the BLF. I’m happy to continue raising money for them through donations etc - because research into better treatment for the symptoms is the best we can hope for.

Maybe, in the future, if stem cell research gets off the ground, who knows. But I doubt that’ll be in my lifetime.

As far as I’m concerned, there is no cure. Just treatments for the symptoms.

Peace.

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Yes exactly, but I think it's the fact that they keep urging for people to be diagnosed earlier. Ok, go to the doctors, get diagnosed, and then what? There is no medication to alter the course of the disease so it's not as if they can do anything other than monitor the progression. Presumably if you can't breath properly you will go to the doctors anyway. If it gets picked up via another way before you have symptoms, it will still progress anyway with the added mental aspect of knowing what is going to happen.

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