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Stories from April, 2017

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Pulmonary Fibrosis Celebrities

Pulmonary fibrosis is a chronic lung disease where the tissue in the lungs becomes scarred and stiffens over time. Like all diseases, PF does not discriminate and there have been many celebrities who have suffered from the condition. Sadly, some have lost their lives to the disease.

According to Wikipedia, here are seven famous people who lost their fight with pulmonary fibrosis.

Marlon Brando
Born in Nebraska in 1924, Marlon Brando Jr. went on to become one of Hollywood’s acting legends. Famous for starring in such iconic roles as Vito Corleone in The Godfather and Terry Malloy in On the Waterfront. Brando died from respiratory failure in 2004, following a long fight with pulmonary fibrosis and congestive heart failure. He was 80 years old.

Peter Benchley
The New York-born author is most well-known for writing the book and screenplay, Jaws. The book was published in 1974 and remained a bestseller for 44 weeks. The book was then made into a film in 1977 and made more than $470 million worldwide. He died in 2006 following complications from pulmonary fibrosis at the age of 65.

Evel Knievel
Motorbike stunt artist Evel Knievel (born Robert Craig Knievel) broke many world records and was famous for his death-defying stunts in the 1970s. Knievel was rumored to have broken or fractured more than 40 bones during his career, but he was a staunch advocate for safety helmets. Knievel’s organs were not as resilient as his bones — he suffered from hepatitis C and needed a liver transplant.  In 2005, he was diagnosed with idiopathic pulmonary fibrosis and required 24 hour oxygen therapy. He died in 2007 at the age of 69.

Scott Brady
With a career spanning four decades, Scott Brady is best known as a Hollywood actor who specialized in Western films and television programs. Born in 1924 in New York, Brady moved to L.A. in 1946 to pursue his acting dream.  He was diagnosed with pulmonary fibrosis in 1981 and required oxygen therapy until he passed away in 1985 at the age of 60.

Joanie Spina
Joanie Spina was a dancer, choreographer, and magician who became famous working with the renowned illusionist David Copperfield. As well as having pulmonary fibrosis, Spina was also treated for cancer. In 2014, she was due to have a lung and liver transplant, however she passed away before the procedure. She died in August 2014 at the age of 61.

John Barry
Born in Minneapolis, Minnesota, John Barry is most famous for popularizing the use of the household oil WD-40. Through clever marketing and advertising, Barry took WD-40 from an industrial product to a household product. In 2009, Barry died from pulmonary fibrosis in San Diego, California, at the age of 84.

Sheila Matthews Allen
Sheila Matthews Allen was a Hollywood actress famous for roles in the films Poseidon Adventure and Towering Inferno and TV shows like Lost in Space and The Waltons. Allen passed away in November 2013 after a prolonged battle with pulmonary fibrosis. She was 84 years old.

 

[Taken from: pulmonaryfibrosisnews.com/2017/04/26]

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Every Breath You Take

Breathing is an instinctive, vital and unconscious process and so it can be hard to believe that you could be doing it better, especially if you have a lung disease and suffer with breathlessness. But it is possible that, even with Interstitial Lung Disease / Idiopathic Pulmonary Fibrosis (ILD/IPF), you could be breathing better.

ILD/IPF causes scarring in the lungs and reduces the efficacy of breathing; the lungs become stiffer and less elastic, reducing their ability to expand. This eventually affects the transfer of gases in the airways, as the scarring hardens and thickens the airways, breathing becomes more difficult and breathlessness start to occur during activities of daily living. Cough is the other symptom often mentioned by patients. Yes, all of this is due to the disease process, but something can still be done to help you manage your symptoms better.

Eastern medicine has always focussed on breathing control, promoting it as an adjunct to treat poor health. Qi-gong, Tai-Chi and yoga all focus the mind on utilizing your breathing muscles (especially your diaphragm) to achieve a flow of movement and deep relaxation to restore the body’s balance. Western medicine is starting to take this holistic approach on board and one such complementary therapy is Buteyko. The Buteyko Breathing Technique (BBT) is an approach which considers your physical and mental condition within the context of your lifestyle, environment and diet. The focus is on anxiety, relaxed breathing, diet, stretches, stopping cough and breathlessness all of which have a role to play in ILD/IPF.

The current evidence base is in asthma, showing quite strongly that it helps manage symptoms alongside pharmacological therapy and significantly improves quality of life for patients (British Thoracic Society /Scottish Intercollegiate Guidelines Network 2016, Global Initiative for Asthma 2016). It is not seen as a magic pill and it is not necessarily about being symptom free or drug free, but it’s a way of self-managing and feeling more in control of breathlessness and cough.

The BBT method comes from Konstantin Buteyko, who developed the theories as an intern in Moscow in the 40’s and 50’s. It showed dramatic results and the programme was rolled out amongst asthmatic children across Russia who were admitted to hospital. The technique spread to New Zealand, Australia and eventually came to the UK in the late 1990’s at The Hale Clinic in London. It was initially seen as a pseudoscience, with the reasons that Buteyko put forward for why the technique worked being disproven; however, current evidence has shown quite strongly that it works, and therefore it has been included in UK guidelines as mentioned above.

Figure 1 describes how the more anxious you become about being breathless, the more breathless you will become due to physiological responses occurring. BBT teaches you to control this as you keep your breathing even by switching on your parasympathetic nervous system and therefore turning off your fight or flight response.

 

 

Physiotherapy will assess how you are breathing during rest and during activity and review what things are like for you on a daily basis. Depending on your goal, a management plan will be written with you. The number of sessions required depends on your need, but it is usually around six, with treatment focussing on nose breathing, diaphragmatic control and control over cough. You will be required to do some work at home and it takes some commitment as you are trying to instil a new habit, but you should notice the difference within 1-2 weeks if you stick with it.

BBT has been shown to be effective in other lung diseases with no adverse effects documented. BBT will help you to manage your condition better and you will be supported by a physiotherapist during this period. If this is something that you think you may be interested in, speak to your respiratory consultant at your next follow up appointment.

Written by: Helene Bellas, Specialist Respiratory Physiotherapist, University College London Hospital