My story by Alpha One Antitrypsin Deficient sufferer

Today we are happy to publish real story of Alpha One patient from United Kingdom: Kay Anderson. Her story is very emotional and inspirational! Kay describes very beautiful effects of stop smoking. 

Thank you Kay for sharing you real story with us!

We are very grateful to Respiratory Decade Member from Brazil Doctor Marilia Varella for preparing of this post!

I was diagnosed with Alpha One Antitrypsin Deficiency (A1AD) at 45, a year before being diagnosed I got increasingly sick, I was always very slim but I dropped over 30lbs in weight and couldn't breathe on going up inclines or stairs and heavily polluted days, I lived in one of the most industrial city's in the UK at the time Manchester. I was initially to frightened to see the Doctor as I was so convinced I had 'lung cancer' finally I was urged off many friends and family to go find out.

I was seen by the Doctor locally and sent immediately for further tests to the Heart and Lung Specialist at a local Hospital, they ran a succession of tests and then finally asked could they perform a finger prick test to see if I had this incurable genetic condition (not known to me at the time), they assured me the risk was low as this disease was very rare, so not to worry. but needed to rule it out as I was too young to be showing signs of emphysema as this was my medical diagnoses at the current time.  I did the test and left.  One week later the phone call came through from the Hospital that I was a Alpha One Antitrypsin Deficient sufferer, and that I would immediately need to 'stop smoking' I was so relieved to not have lung cancer and really not know about this condition I put the phone down and carried on 'smoking' …big mistake.

Very few Doctors, Specialists and Nurses here in the UK know anything about my condition other than its a genetic one, here lys the problem had I been more informed and indeed explained to in depth I would have ceased smoking there and then! A lot happened and I moved down to Devon where the air is beautiful and pure and very clean, I was lucky and totally changed my life...however the 'smoking continued' and I grew sicker, I was put in touch with Adapt at Birmingham whom I thought would be able to help me, where I saw the Prof Stockley originally and then on further visits different Consultants, they explained the condition but still (perhaps through denial) I refused to listen ...I had been a smoker since the age of 15 and for me to quit was not something I wished to even consider life shortening or not! In 2009 I saw a gentleman Consultant at Adapt who gave me 2 years left to live and my Force Expiratory Volume (FEV) was that low at the time around 22% he wanted to list me there and then for 'transplant' ...however this was something he was not prepared to do as I was still smoking!! I was due to have a CT Scan done that day as at this point I had not had one, I decided after news on that scale to leave and come home to Devon and die!.....

My husband had tried all to stop me smoking and I was so increasingly out of breath I was shuffling along from the bedroom on my hands and knees to the lounge to sit and carry on lighting up (unbelievable) but true, I had never had children and asked that I may get a puppy Xmas 2009 my wish was granted and in came my bichon frise dog Reg, I had him 8 weeks and could just about manage to get down the steps and to the bottom of the avenue and back before I was ready to collapse with exhaustion and breathlessness, something now had to change! I was and needed to be responsible for my little dog whom I adored! Feb 2010 8 weeks after Xmas I quit! I saw hypnoses who I thought did nothing and I went on the electric cigs, which I still suck on to this day! I have been a non - smoker for just over 2 years I don't miss it and I know it has damaged me along with this disease where I will need a lung transplant someday soon, I will be 51 years old this June, however I fought back and walk both my dogs (I got another one ) as I love the breed so much I walk nearly a mile most days with them, my FEV on Dec 2011 was around 41% a huge increase!  People ask me who I achieved this well through hard work and dedication and strength of mind over health matters, I have always been a fighter and a survivor and I fought for my life (or what was left of it) against all odds! I am now on supplementary oxygen for my day to day activities as I de sat very quickly, however not as yet on 24/7 which I have been fortunate with on my diagnosis (however this will come) I am currently only 1 point away from that and clinging on by my finger nails!  .....so my daily regime is set in stone, I medicate, I relax , I pace myself and I walk , I eat healthy food, I drink very rarely and I avoid people and places as we have no protection  germs and infections are all extremely damaging to a Alpha One person and in some cases can be 'lethal' , we have no protection around our lungs so a cold can turn quickly to pneumonia, and of lungs eat themselves away as the neutrophil does not know when to stop eating the bad stuff and carries on eating the good (our lung tissue). This disease has completely ruined and devastated my life in every way you can think of I am like a 85year old women at just 50! I have very bad days and days where I am okay, I struggle with everything, getting dressed, washing myself, and my hair, and I am unable to do housework, or cook through lift and push actions...I have support from my husband who has been a godsend through this, and I am doing my best to hold on to my lung function through living like a women in a (bubble)! I have no life to speak of and I have no or little energy daily this never fluctuates! and as Alpha One is a progressive disease we get worse over time, there are treatments for us one being augmentation therapy ...however we are denied this in the UK this therapy enables the AAT to be replaced weekly by infusion  and helps keep us a healthy as is possible, it is by no means a cure, but can delay the need for transplant for many years in most cases, my only medications daily are those given to a COPD person who is of course a completely different fish to us in so many ways, and of course not really affected only through the damage incurred on the lungs they do make AAT which makes a huge difference! to them and their life expectancy..  however antitrypsin can and for no reason slip further so every 6 month assessment is critical for us, in order they can know when our time comes for listing for a 'transplant' we all require a double lung transplant, and this of course is terrifying!

Please be aware that if you smoke there are so many hidden and of course unknown diseases we carry or can have as a result of the destruction and devastation this can do to our bodies and health!, I know as I sit here writing this given the choice now of cancer or Alpha One I would have taken the C ...the reason is simple it is quick and without any further fear other than death...we are like 'walking corpses' who live and keep living with what we have until we are finally ready to be taken to the transplant room, the outcome of course of this is as individual as Alpha One some make it, some don't...Alpha One is a game of roulette and the dice can fall at any time, we live on a knife edge daily! this is no fun ride ...so think before you light up a cig....you may get lucky, you may not , you may die of cancer or you may find out like me you will become the walking dead for many years and suffer in silence where Alpha people go, with no cure, and no relief...please quit before you do the damage you will never repair or indeed heal. I am dying at just 50! learn from me. ......please!  The worse bit about all this is I was a fun and outgoing party person who lived to live, I moved in many circles as a young women and could have been a international model! I had more chances and lifestyles offered me than most and I have ended up like a old lady, chocking and fighting for breath! not such a pretty sight anymore. 

There are millions of related illnesses through cigarettes and maybe the Governments of all Countries could and should categorize them all...this might be a start! and save a lot of young people into the bargain...

Respiratory Decade 2012: Willing is not enough; we must do

Todays post I would like to start with the words of the famous German poet  Johann von Goethe: 

Knowing is not enough; we must apply. 

Willing is not enough; we must do.

We are creating social media Respiratory platform: 

• with online tools which can facilitate conversations about Respiratory diseases;

• with connections between Respiratory friends, peers and influencers;

• with international collaborations;

• with a call for humanizing personas and audiences, and the stories that link them together;

• with compassion;

• with words, pictures, video, chatter, audio, and also experiences, observations, opinions, news, and insights.

We are inviting you for collaboration!
Thank you for you help and permanent support!

United Nations on World TB Day 2012

Today, we are happy to publish message from United Nations General Secretary Ban Ki-Moon on Tuberculosis!

For too long, tuberculosis has not received sufficient attention. The result of this neglect is needless suffering: in 2010 alone, nearly 9 million people fell ill with TB and 1.4 million died, with 95 per cent of these deaths occurring in developing countries. These numbers make tuberculosis the second top infectious killer of adults worldwide.
The impact reverberates far beyond the individuals directly affected. TB takes a heavy toll on families and communities. Millions of children have lost their parents. Children who are exposed to sick family members are at high risk of contracting the disease. Far too many go untreated, since TB is often difficult to diagnose and treat in children. That is why this year we should aim to expand awareness of how children are affected by the disease.
It is critical to support those who lack the means to respond with the care and treatment they need to enjoy healthy and productive lives.
With the right interventions, we can make a major difference. We know how to end all forms of TB, including multi-drug resistant TB - which has emerged in most countries - before it leads to severe manifestations that are costly to treat and cause additional suffering. Where we have taken strong and proven measures, the number of people falling ill with TB has declined markedly.
The World Health Organization reports that our concerted efforts have helped to cut death rates by 40 per cent since 1990. Forty-six million people have been cured and seven million lives have been saved since 1995 thanks to the efforts of the United Nations, governments, donors, civil society groups, private partners, public health experts, and tens of thousands of health workers and affected families and communities.
Now is the time to be even more ambitious and "Stop TB in our lifetime," the theme of this year's World TB Day.

I call for intensified global solidarity to ensure that all people are free from fear of tuberculosis and its devastating effects. Let us vow to end the neglect of TB and to end deaths from this disease in our lifetime.

Cystic fibrosis gene therapy trial 2012

Government funding announced 16 March 2012 will allow a groundbreaking gene therapy trial for cystic fibrosis to go ahead. The £3.1million grant from the National Institute for Health Research (NIHR) and the Medical Research Council (MRC) will fund the largest trial of its type yet with 130 adults and children with cystic fibrosis taking part.
The trial, which is due to begin very soon, will be co-ordinated by the UK Cystic Fibrosis Gene Therapy Consortium (GTC), a group of scientists and clinical teams from Royal Brompton & Harefield NHS Foundation Trust, Imperial College London, the universities of Oxford and Edinburgh and NHS Lothian. The group has worked together for the last decade to develop gene therapy for cystic fibrosis , which is the most common fatal inherited disease in the UK, affecting around 9,500 people nationally and over 90,000 worldwide.

The trial participants, of whom more than 50 per cent are patients at Royal Brompton Hospital, will receive the treatment by inhaling molecules of DNA wrapped in fat globules that deliver the replacement gene into the cells in the lung lining. Half the participants will receive the real treatment and half a placebo in a double-blind study. Patients aged 12 and over will receive one dose a month for one year.

The Tips from Former Smokers campaign

Center for Diseases Control (CDC) this week launched the Tips from Former Smokers campaign. This campaign features real people suffering as a result of smoking and exposure to secondhand smoke. All stories are real and send a powerful message:

Quit smoking now. Or better yet — don’t start.

Terrie talks about how she gets ready for the day after the effects of treatments for throat cancer caused her to lose her teeth and hair, and to have a tracheotomy.

Jessica, a mother with a young son who suffers from asthma attacks due to secondhand smoke exposure.

Now its time to quit smoking! 

World No Tobacco Day 2012

Dear friends I am happy to present you our new member from Brazil Doctor Marilia Varella. Today we are publishing post by Marilia:

This is an yearly celebration meant to inform the public worldwide on the dangers of using tobacco. It is an awareness day!
But why is Tobacco? Because, according to World Health Organization, and we pulmonologists all agree with these data, smoking cause more than five million deaths a year – killing an average of one person every six seconds – and accounts for one in 10 adult deaths. Smoking is the single largest avoidable cause of illness and premature death worldwide .
So we must do something. How about to join this cause, to share information about the tobacco-free initiatives in your country and World No Tobacco Day? We all believe in our role in quitting process. Now we need to invite more health professionals to do the same - a brief advice will often lead to action!

I`d like to draw your attention to the fact that, right now in Brazil, the great issue is the prohibition of added sugars and flavorants to cigarettes. This discussion was postponed (due to a strong cigarette business lobby) and was finally discussed on March 13, 2012: flavorants are banned but not (yet) sugar ...

 

Finally, I want to share some good links I found … browse them and have some good ideas! 


http://www.who.int/tobacco/wntd/2012/announcement/en/index.html

http://www.thecochranelibrary.com/details/issue/699927/World-No-Tobacco-Day.html

http://www.cigarettesflavours.com/tobacco-marketing-strategies/

http://pulmaosarss.wordpress.com/2012/03/11/etica-deve-ser-global-e-nao-local/

Tell your friends and networks about

World No Tobacco Day 2012! 

Let`s work together to ban smoking!

also we can join us on facebook:

Launch of International Collaboration in Asthma, Allergy and Immunology

The reasons for the negative effects of allergies and asthma are variable, but in most countries patients with these diseases are either inadequately or improperly treated, resulting in a greater negative effect and resources expended. The awareness of these trends among politicians, other policymakers, patients, the general public, and many health care insurers outside the specialty of allergy and immunology is limited. This lack of awareness and knowledge gap has resulted in reduced resources allocated to treat and promote research for these diseases.

Recognizing a lack of consensus-driven information and general recommendations, four of the most influential allergy/immunology professional organizations have joined forces to launch the International Collaboration in Asthma, Allergy and Immunology (iCAALL). Participating in iCAALL are the American Academy of Allergy, Asthma & Immunology (AAAAI), the American College of Allergy, Asthma & Immunology (ACAAI), the European Academy of Allergy and Clinical Immunology (EAACI) and the World Allergy Organization (WAO).

Here is a link to press-conference.

iCAALL

iCAALL is designed to collect and disseminate consensus-driven information about allergies, asthma and immunological diseases. Communicating this knowledge can positively impact diagnosis and treatment, as well as cost containment and policy decisions.

A major focus of this initiative is the production of a series of International Consensus (ICON) reports. These documents offer general recommendations based on global challenges in caring for patients with allergic and immunologic diseases.

The first ICON was dedicated to food allergies and was just published: 

Food Allergy ICON