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Top 10 Highlights in 10 Years

1: Involving You

We have had many opportunities to meet our supporters over the years from small personal meetings to large tours; both are very special to us – you are the lifeblood, or the lungs (!), of Breathing Matters.

Our launch event on 19th January 2011 seems like only yesterday.  Professor Geoffrey Laurent, the then Director of the Centre for Respiratory Centre, was joined by his team of scientists and researchers as well as respiratory doctors.  It was attended by over 100 patients and relatives.  Speakers included Jo Porter, Malcolm Weallans and Manjiry Tamhane who spoke about topics ranging from living with respiratory disease through to the importance of patient support in shaping future scientific research and ways you could directly help us.  Our scientists were inspired by meeting our supporters and the patients whom their work helps.

Since then, you have attended our research meetings, events and our patient supporter meetings; you have helped us steer the way forward and shaped our research; you have advised on our fundraising and awareness strategies, you have attended our centre tours to see our labs and talk to our researchers about our work, and you have helped celebrate our achievements.

2: The First UK Treatments for IPF

In 2014, UCLH became an NHS-England Specialist Centre for the diagnosis and management of Interstitial Lung Disease.  This was important and timely as it enabled our doctors to prescribe idiopathic pulmonary fibrosis patients with Pirfenidone and Nintedanib – the first treatments in the UK available to IPF patients. These antifibrotic therapies slow decline in lung function and reduce the risk of acute respiratory deteriorations.

This was a game-changer.

3: Funding Clinical Fellows and Their Research

Breathing Matters has funded three celebrated Clinical Fellows:

  1. Lawrence Matz Clinical Fellow – Dr Theresia Mikolasch, who set up our Cryoscope Service and was the original soldier in our Neutrophil Army.
  2. Mark Hulme Clinical Fellow – Dr Helen Garthwaite, who worked on our important PET response studies.
  3. Christopher Whittington Clinical Fellow – Dr Emma Denneny, who is currently working on novel biomarkers to detect lung fibrosis with a blood test, earlier than standard CT imaging.

The work that our Clinical Fellows have done has enabled us to leverage a further £450,000 in grants.

4: Pioneering Diagnostics – Cryoscope

Our Lawrence Matz Clinical Fellow set up the Cryoscopic Lung Biopsy Service at UCLH, a pioneering minimally invasive diagnostic technique.  The cryoscope was part-funded by Breathing Matters.  In February 2013, UCLH diagnosed idiopathic pulmonary fibrosis from a cryoscopic lung biopsy – this was a UK first.

This was important for:

  • The Patient: who undergoes a day case procedure as opposed to a surgical lung biopsy, thereby avoiding hospital admission, an unsightly and painful scar and a chest drain.
  • The histopathologist: who said the quality of the tissue and preservation were excellent and much better than other minimally invasive biopsies due to the freezing during the procedure.
  • Our ILD research programme: We now have access to lung tissue that is removed, but is excess to that needed for clinical diagnosis.

5: Predicting and Detecting Pulmonary Fibrosis

A lot of our research is looking at better ways to detect pulmonary fibrosis even whilst the lung CT scan is normal. Our ultimate aim is to make an early diagnosis of PF with a blood test. Until then, we are looking at using very very sensitive imaging techniques, such as PET scans and MRI, to detect early changes in radiologically normal lung on CT scans. We have found that we can predict how severe PF is and how quickly it will progress from these PET scans and they may even help us guide treatment. Another exciting area is radiogenomics in which we use imaging patterns to understand the role of genes that predispose individuals to developing IPF.

6: Breakthroughs in Lung Infection

Through work partly done at UCL/H, bronchiectasis was proven to be more prevalent in the UK than previously thought – leading to better GP awareness, diagnosis and treatment.

We highlighted that bronchiectasis in those with weakened immune systems due to haematological disease develops very quickly; better awareness will make doctors much better at recognizing these patients and referring them to specialist centres, such as UCLH.

Our other work uses computers and CT scans to measure the exact degree of the dilatation of the bronchi in patients with bronchiectasis.  This is a significant breakthrough as it will allow us to follow what happens to a particular patient over time, and rapidly identify if things are getting worse.

The Bronch UK national study was the first study funded by the Medical Research Council into bronchiectasis for many years. The aim of the study was to look into the spectrum of disease caused by bronchiectasis, how severe the disease is and how it actually affects the patients’ quality of life.  Thank you to our 150 recruits!

Breathing Matters has supported the important PHOSP-COVID Urgent Public Health study looking into the long term effects of the COVID-19 virus which causes lung infection.

7: Spreading the Word

Where would the medical world be without scientists and researchers?  How would they get new treatments for their patients?  How would GPs find out about new or little known diseases and know when and how to act quickly?

Breathing Matters has reached out and spread awareness through various ways over the last 10 years.  Each September, we highlight global pulmonary fibrosis awareness month through our #Breathtember campaigns, we communicate regularly with you via our website, newsletters and social media, we have held awareness stalls in our hospital [world pneumonia day, #Breathtember, organ transplant month, bronchiectasis charity stalls] and at local institutions, including Sainsbury’s where we were Local Charity of the Year.  We even advised on the IPF storyline on Coronation Street in 2019.

8: FUNdraising and FUNdraisers

Breathing Matters has had some amazing and innovative fundraising challenges over the last 10 years.  We started our fundraising journey in 2011 with the first of our charity bike rides in Richmond Park.  After 4 years, we went bigger and moved to the Olympic Velodrome offering a myriad of biking challenges.  One of our star fundraisers, Jane Walker, with the help of many of our supporters, including the Holst Singers, has now raised £30K for bronchiectasis research through the Breathing Matters charity stalls and charity concerts-amazing!  Keeping ahead of the curve, our charity silent discos at the London Steam Museum were a big hit and 2020’s virtual fundraisers were challenging in a different but safe way. But our supporters have come up with some of the BEST ideas, including golf days, head shaves and hairdressing days, jewellery sales, bake sales, house clearance sales, swims/walks/runs/bike rides of all distances, motorbike challenges, spinathons, zumbathons, charity CD, concerts and recitals, going up mountains, falling from planes or bungying, books, boxing, dieting, giving up alcohol or smoking, charity beer, charity dinners, pancake events, husky sled trails and even a tractor run … among many many more!

9: Royal Visit

In 2016, UCL Respiratory was honoured when HRH Princess Anne paid us a visit.  The Princess Royal attended in her official capacity as Chancellor of UCL to officially open the refurbished labs.  During her visit, HRH met with the designers and architects along with our important researchers and scientists, and was treated to a tour of the labs.

The Breathing Matters team was introduced to the Princess Royal and it was a huge honour to have the opportunity to talk with her about the charity and what we’ve accomplished.  HRH asked us to “keep up the good work” and, with your help, we have done just that!

10: Your Support

You, our supporters, have helped us achieve so much.

With YOUR help, at 3 years, we had reached £250K; at 7 years, we had reached £500K; and at 9 years, we reached an incredible £750K – all because of you!

We have decided to keep our charity small so we have little overheads, enabling all your hard-earned fundraising and donations to be funnelled into our vital research.

 

If you would like to help us ‘keep up the good work’ and make a difference, you can do so via our Justgiving Page or email us on breathingmatters@ucl.ac.uk for our bank details.

 

 

Regular Donors Rock

Did you know, the average person in the UK will give nearly £30,000 to charitable causes throughout their lifetime.  The UK is in the Top 10 most generous countries of the world – almost 70% gave to charity in 2018!

We are so lucky at Breathing Matters to have some amazing supporters who give regular monthly donations to help our vital research.  A small donation goes a very long way at Breathing Matters as we have little overheads which enables your donations to go straight to where it counts – the research itself!  Regular giving provides us with much needed funds that we can rely on and this can help us plan our research projects for the future.

 

We would like to say a MASSIVE THANK YOU to our regular givers – you know who you are!  We depend on your regular gifts – you really do make a difference!

 

At a time when our lungs need help more than ever, if any of our community is interested in supporting Breathing Matters on a regular basis and don’t currently do so, we hope that you will consider pledging a monthly gift to support our research.

To set up a regular gift, all you need to do is:

  • Complete the enclosed Standing Order Form
  • Hand this in to your bank so they can set up the Standing Order.
  • Return a copy to Breathing Matters for our records.

Have a look at our updated pulmonary fibrosis wish list:

£5 – For equipment to take blood from a patient with pulmonary fibrosis/IPF for research.

£10 – For a specialised test to look at novel biomarkers in the blood of IPF patients.

£20 – For staining 4 slides of lung tissue from IPF patients to study novel molecules and link these with molecular imaging scans.

£30 – For growing individual fibroblasts (cells that produce the scarring) in the lab from the lungs of patients with IPF.

£40 – For an hour of a clinical fellow.

£50 – For analysis of a novel molecular imaging (PET) scan in an IPF patient.

£100 – For a spirometer to use at home to track patients without needing them to come into hospital – our remote monitoring project.

£500 – For isolating the platelets from patients with IPF so that we can examine them in the laboratory and compare them to platelets from people with normal lungs.

£5,000 – For equipment and running costs for a ‘Western Bot’ which allows us to look at abnormal proteins in the lungs of IPF patients.

£50,000 – For pump priming a blue sky research proposal: Allows a senior clinician to undertake a substantial period of research (a year or more) as a named research fellow to develop an hypothesis that is then submitted for full funding (£300K+) from a medical research charity.

 

Autumn 2020 Newsletter – Out Now

 

For the Autumn 2020 newsletter, please click here

 

 

 

 

ILD Roundup: What you have helped us achieve in 2019

Breathing Matters was established 8 years ago with the aim of finding better treatments for interstitial lung diseases (ILD) and lung infections. Since that time, we have raised money and awareness into these often neglected conditions. Looking back over the 8 years, we have come much further than any of us would have anticipated in the beginning. We have established new theories on the development of ILD or lung fibrosis and the role of the immune system in particular the clotting cascade and neutrophils. We also have better ways of monitoring and diagnosing these conditions and our novel nuclear medicine imaging programme and relatively non-invasive lung biopsy service are the first in the UK. We could not have achieved any of this without the support of our funders and our patients, so thank you all. This review highlights our achievements to date and our future directions in ILD.

Relatively Non-Invasive Lung Cryobiopsy (2014-ongoing):

Objective: To find a less invasive and better diagnostic tool for every patient with ILD

Main benefactors:     Teresa Timberlake and family – equipment purchase + Lawrence Matz Memorial Fund – Clinical Fellow                

Breathing Matters investment: £52,000 salary; £36,000 (total £88,000)

Leveraged funding: £347,000

Outcomes:

1.      Novel cryobiopsy service, first in the UK including training other centres; presentations at European Respiratory Society (2015), British Thoracic Society (2014-6); publications: review 2016; papers in preparation:

2.      Completed Lung-INHALE study Study (2019) to assess inhaled drug deposition using CLB.  This will allow drug companies to develop inhaled therapies for IPF and be sure that they are reaching the part of the lung where they are needed. The use of inhaled therapy will avoid some of the side-effects of anti-fibrotic drugs that are taken as tablets.

This project was developed in discussion with a family whose mother had had a surgical lung biopsy towards the end of her life. Her experience was such that her family felt that a less invasive alternative must be available. Dr Theresia Mikolasch, the Lawrence Matz Clinical Fellow, took this on for Breathing Matters to find out about and train in new techniques. Dr Mikolasch then returned to UCLH and established the first and only UK cryoscopic lung biopsy (CLB) service. CLB is a new way of obtaining larger lung biopsies using a flexible bronchoscope passed into the lungs through the mouth. The patient is sedated and surgery is avoided. This is not only better for the patient than a surgical lung biopsy, but also provides a solution to the lack of biopsy samples available for scientific research.  GSK were so excited by the technique that they awarded Dr Mikolasch and Dr Porter a grant of over £300,000 to carry on the service for an additional 3 years.

Novel FDG-PET Imaging to Predict Prognosis and Response to Treatment in ILD (2014-ongoing):

Objective: To find a new test (biomarker) that will enable us to predict prognosis and response to treatment in each individual patient.

Breathing Matters investment: £34,766

Leveraged funding: £173,850

Funding from BLF for clinical trial of FDG-PET in post transplant bronchiolitis £40,000

Outcomes: Novel FDG-PET imaging programme in ILD – first in the UK; presentations at American Nuclear Medicine Society (2015), British Thoracic Society (2015-6); American Thoracic Society (2017)

Publications:

Pulmonary 18F-FDG uptake helps refine current risk stratification in idiopathic pulmonary fibrosis (IPF). Win T, Screaton NJ, Porter JC, Ganeshan B, Maher TM, Fraioli F, Endozo R, Shortman RI, Hurrell L, Holman BF, Thielemans K, Rashidnasab A, Hutton BF, Lukey PT, Flynn A, Ell PJ, Groves AM.  Eur J Nucl Med Mol Imaging. 2018 May;45(5):806-815. doi: 10.1007/s00259-017-3917-8. Epub 2018 Jan 16.

Synergistic application of pulmonary 18F-FDG PET/HRCT and computer-based CT analysis with conventional severity measures to refine current risk stratification in idiopathic pulmonary fibrosis (IPF).

Fraioli F, Lyasheva M, Porter JC, Bomanji J, Shortman RI, Endozo R, Wan S, Bertoletti L, Machado M, Ganeshan B, Win T, GroveEur J Nucl Med Mol Imaging. 2019 Sep;46(10):2023-2031s AM.

Next steps:

1.      FDG-PET will be used as a response biomarker to see if we can detect which patients benefit from anti-fibrotic therapy and which patients do not benefit. We are applying to the NIHR for a £400,000 grant to carry out this study:

2.      We and others have shown that patients with IPF are more prone to blood clots. We have some very exciting work looking at anticoagulation in IPF.  We have completed 2/3rds of the study and will then publish our findings later in 2020 (see below).

Interstitial lung disease (ILD) consists of a heterogeneous group of diseases with varying amounts of interstitial inflammation and fibrosis. Survival in the most severe form of lung fibrosis, idiopathic pulmonary fibrosis or IPF, is particularly poor; however, there is heterogeneity in outcome. Some patients gradually deteriorate; some undergo stepwise progression, whilst others decline rapidly. Moreover, much of the prognostic data heralds from an era when the criteria for diagnosing IPF were less well and differently defined than at present.  There is a definite need to find prognostic biomarkers to predict outcome in IPF patients

Positron emission tomography (PET) offers the ability to non-invasively investigate cellular metabolism in vivo. PET studies in animals have yielded valuable insights into the biology of IPF and ILD and there is potentially encouraging evidence that PET may aid the development of therapeutic interventions to treat these debilitating conditions. It has been recently demonstrated that 18F-Fluorodeoxyglucose (18F-FDG) PET signal is consistently raised and can be objectively measured in patients with IPF. Moreover, these PET signals are shown to be stable and reproducible.

We have shown over several years and imaging hundreds of patients with ILD that the baseline measures of pulmonary 18F-FDG PET signal to predict survival in patients with IPF compared to other more established prognostic data.  We have also shown that combing PET data with our clinical scoring system based on gender, age and physiology (GAP) data (“PET modified GAP score”) refined the ability to predict mortality.

Future studies are to investigate the role of FDG-PET scanning in other ILDs, such as Rheumatoid arthritis (see below) and systemic sclerosis.

Rheumatoid Arthritis (RA) Associated ILD (2018-ongoing):

Objective: To discover why 1:5 patients with RA will develop lung fibrosis and what novel treatment can prevent disease progression.

Breathing Matters investment: £34,766

Leveraged funding:  £102,766

Outcomes: Novel biomarker test for neutrophils extracellular traps (NETS) in ILD in discussion with UCL business for further development; presentations at American College of Rheumatology (2014-6); British Thoracic Society (2016); British Rheumatology Society (2014-6);

Publications:

The lung in a cohort of rheumatoid arthritis patients-an overview of different types of involvement and treatment. Duarte AC, Porter JC, Leandro MJ. Rheumatology (Oxford). 2019 Nov 1;58(11):2031-2038. doi: 10.1093/rheumatology/kez177.

Autoimmune rheumatic disease IgG has differential effects upon neutrophil integrin activation that is modulated by the endothelium. Khawaja AA, Pericleous C, Ripoll VM, Porter JC, Giles IP. Sci Rep. 2019 Feb 4;9(1):1283. doi: 10.1038/s41598-018-37852-5.

Next steps: To work with a group in Cold Spring Harbour, USA to see if inhibiting NET formation prevents fibrosis.  To see if the presence of NETs in the blood can predict whether patients will develop lung fibrosis.

RA is a chronic debilitating disease estimated to afflict 13% of the world population. Around 10% of patients with RA will develop an ILD that is very similar to the lung fibrosis that we see with IPF. Dr Akif Khawaja was funded by Rosetrees and UCL to carry out a PhD into the aetiology of RA-ILD. His work proposed that RA is a disease that starts in the lung. That chronic lung damage caused by smoking, infection and other insults causes the immune response to recognize the lungs and joints as “foreign” and attack them causing chronic damage. His work implicated neutrophils in this process and, in particular, the p38 MAPkinase pathway.  We are hoping to develop a new test using blood or sputum to detect early activation of neutrophils in the lungs of patients at risk of ILD.  This same test may act as a biomarker for prognosis and to detect early response to novel therapies.  

A Trial of Anticoagulation in IPF (2016-2020):

Objective: To assess the potential of anticoagulation as a treatment for IPF

Main benefactors: The Hulme Family – The Mark Hulme Clinical Fellow

Breathing Matters investment: £40,000

Leveraged funding:  £100,000 from UCL/H NIHR BRC

Next steps: A trial of anticoagulation with heparin in IPF using FDG-PET as a response biomarker

At present, we do not know the exact cause of idiopathic pulmonary fibrosis (IPF), although research has identified lots of processes that are likely to be involved. Currently, we believe that microscopic injury occurs in patients with IPF and then the body responds to repair this, but does so in a way that leads to more damage and scarring. One of the processes involved in repair pathway is coagulation, which minimises blood loss when tissues are damaged.  Patients with IPF are at increased risk of blood clots and this can reduce their already low life expectancy. We also think that these blood clots drive the worsening of their lung disease. Researchers have shown that clotting is over-activated in the lungs of IPF patients and we want to investigate how reducing this might improve the disease.  Based on work carried out at UCL, we believe that anticoagulation with heparin is safe and may even prevent disease progression in IPF. Patients will be asked if they would be willing to take the oral anticoagulant dabigitran for 3 weeks, to reduce clotting. We will perform blood tests and FDG-PET scans before and after taking the drug to judge response.  If we find that the heparin is safe and the patients report some improvement that we can confirm with questionnaires lung function and FDG-PET scans, then we will progress to leverage funding for a much bigger trial.  We have completed 2/3rds of this study and have analysed the results. We have found a small effect and the suggestion is that we look in a few more patients that we will recruit early in the New Year.

A Trial of a Novel Treatment (Compound X) in IPF (2019-2022):

Objective: To assess the potential of Compound X as a treatment for IPF

Main benefactors: NIHR BRC £100,000

Breathing Matters investment: £40,000

Leveraged funding:  Application to British Thoracic Society, Wellcome Trust and NIHE.

Next steps: A trial of Compound X in patients with IPF

Assessing effectiveness of treatments for IPF is difficult as often they do not make patients feel better, despite decelerating disease. Currently, we are guided by regular breathing tests and special imaging of the lungs, which are insensitive to changes and may be unpleasant for patients. We need better tests like a simple blood test to predict the prognosis for individual patients, and their responses to treatment. Causes of IPF are unknown, but we have found that specific white blood cells, called neutrophils, are increased in the lungs of patients with IPF. We also found that the more neutrophils in the lungs, the faster the decline from IPF. This suggests that neutrophils are actively worsening IPF. Neutrophils produce a substance called X that we detect in the bloodstream of patients with IPF. No-one has investigated whether X causes or worsens IPF. We plan to quantify X in the blood and lungs of patients with IPF. By comparing X levels in patients with IPF against healthy individuals, this will establish whether X is increased in patients, whether high levels of X indicate more severe IPF and whether treatment for IPF reduces X levels in patients that respond. These results will ultimately help design future clinical trials testing Compound X that is able to block X as a treatment for IPF.

Understanding Mucin 5 B and Its Role in IPF (2019-2022):

Objective: To assess the role of Muc5B in IPF

Main benefactors: NIHR £300,000

Breathing Matters investment: £40,000

Next steps: Further investigations in patients with IPF of the effects of blocking neutrophil activation

Publications: A review on mucins in lung disease has been submitted and we hope this will be published in 2020.

It is unclear what causes IPF, but it is thought to be a response to damage to the lining of the airways (epithelium) following an unidentified injury. This results in the

formation of excessive scar tissue which disrupts the delicate architecture of the lung and ultimately death follows from respiratory failure.  We have shown from research previously sponsored by The Rosetrees Trust that a certain type of white blood cell which is specialised in fighting infections called neutrophils may play a role in PF. We have found that neutrophils are increased in the blood and lungs of patients with PF and the more neutrophils you have, the worse the individual’s outcome.  In addition, it is recognised that you are more likely to develop IPF if you have a commonly occurring genetic mutation that causes increased mucus production by the lung epithelium, and in particular a protein called Mucin or MUC5B that gives sputum its stringy quality. We propose that the overproduction of MUC5B may stress the epithelium, making it more prone to damage and scarring. In addition, the increased MUC5B will attract and activate neutrophils from the blood and these white blood cells can cause further damage. We hope that, by identifying treatments that limit the number of neutrophils moving into the lung, we can protect patients from developing PF or from PF progressing. We will use neutrophils and epithelial samples form patients and healthy volunteers to compare differences and see how the MUC5B affects neutrophil activation in the lung. Lastly, we plan to block neutrophil activation and recruitment with a specific treatment that is already being developed for other indications and has an excellent safety profile. If our results are encouraging, we can take this medication into an early clinical trial for patients with IPF.

We have also shown that we can detect very early changes in the CT scans of patients that make too much Muc5B and this might be a very early sign, even before the scan looks abnormal, that these patients are at risk of lung disease.

If you are a UCLH patient and want to get involved in any of the above studies, please discuss this with your consultant.

Get out of Breath for #Breathtember this September

September is #Breathtember – Global Pulmonary Fibrosis Awareness Month

 Get out of Breath for #Breathtember

https://www.breathingmatters.co.uk/wp-content/uploads/2013/06/twitter.png

Tweet Tweet!

To help raise awareness, we would ask that supporters tweet different challenges each day in September including the term ‘#Breathtember and to ask their followers to retweet and share this information as widely as possible.

Think outside the box for your challenges – getting out of breath for you could mean:

  • Cycling around your local park
  • Doing a colourful or musical 5K/10K run or walk
  • Singing until you are out of breath
  • Walking over the wonderous London bridges
  • Blow bubbles!
  • Skydiving
  • Or just simply walking up the stairs!

The important thing is that you tweet your challenge every day including the term ‘#Breathtember’ to raise awareness of pulmonary fibrosis.  Add a photo if you like.  This September, we want as many people as possible to see the term ‘#Breathtember’.  To make the biggest impact, the aim is to get the term ‘#Breathtember’ to trend.

Follow us on Twitter for further details: @breathingmatter 

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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

 

 

Cyclotopia – because Cycling Matters

Cycling Fun   Raising Funds

Experience an action-packed family fundraising day out at the iconic Olympic Velodrome facilities at our Fun Day for all ages at the Lee Valley VeloPark on Sunday, 11th June 2017.

Cyclotopia Package includes:

  • Road Circuit – Cycle on the premium mile long track.  Who can go the fastest?  Who can go the longest?
  • Mountain Bike Trails – Challenge yourself on the exciting off-road trails.
  • Static Bike Racing 
  • Tour de France – Experience Tour de France training in the studio
  • Young Kids BMX – Right in the centre of the Velodrome, not to be missed
  • Kids free under 12 years

Velodrome Package includes:

  • A training session at the Velodrome, the fastest track in the world, with expert coaches.
  • Exciting timed laps.
  • Special guest!
  • Complete Cyclotopia Package.
  • Age 12+
Meet and cycle with Paralympic Champion, Mark Colbourne MBE !!!

This event has something for everyone – from complete novices to experienced cyclists.

To register, visit: http://bit.ly/2cKDKZq

 

 

[Cartoon kindly adapted by @RosAsquith from her book, ‘Max the Champion’ – https://www.amazon.co.uk/Max-Champion-Sean-Stockdale/dp/1847805191]

Healthy Volunteers Needed for UCL Respiratory IPF Trial

Would you like to contribute to Medical Research in Idiopathic Pulmonary Fibrosis?

UCL Respiratory are currently recruiting volunteers to study the IPF fingerprint in the blood.

 

What does it involve?

Participation involves travelling to UCL Respiratory at the Rayne Institute UCL, 5 University Street, London WC1E 6JF, and donating approximately 30mL of blood.

What are the requirements?

You can participate if you are healthy and over 55 years of age.

Who will take my blood?

The blood sample will be taken by an experienced, trained phlebotomist.

Is 30mL a lot of blood?

30mL of blood is a small amount, a blood donation to the blood bank is generally 500mL.

What about travel expenses?

Travel expenses to and from UCL can be reimbursed (subject to prior approval).

Contact us

To volunteer, request more information on the study and on how to take part in it or to book an appointment (no obligation to take part), please contact:

Dr Manuela Platé – email: m.plate@ucl.ac.uk  tel: 020 3108 7736  mobile: 07411 070805

Mr Wes Woollard – email: w.woollard@ucl.ac.uk  tel: 020 3108 7736

 

Gaining Weight and Staying Strong with Lung Fibrosis

It is very important to eat well to maintain your strength and, in many cases, patients with fibrosis need to put on weight to help with this.  Dr Hazel Wallace has written this helpful article to give you tips on staying strong.

Prioritise Protein

Protein is vital for building and repairing muscle tissue.  When your body doesn’t get enough protein, it might break down muscle for the fuel it needs. This can make it take longer to recover from illness and make you more likely to pick up infections. Protein is also very important for a healthy immune system. Certain proteins, known as antibodies, help keep us healthy by defending against disease-causing bacteria and viruses. People with a chronic condition, such as lung fibrosis, often require more protein to keep their strength up to fight infection.  The best sources of protein include poultry, lean cuts of beef, fish, eggs, dairy, beans and lentils.

Drink your Calories

Smoothies are a great way to fit in extra calories, but also extra vitamins and minerals, protein and healthy fats! There are no rules when it comes to a smoothie, and really anything goes – so don’t be afraid to experiment. Start by choosing a good base, such as dairy milk or almond milk. Then add a good source of protein such as yogurt, cottage cheese, or protein powder. Next, add some healthy fats, such as half an avocado, a handful of nuts or seeds or a tablespoon of peanut butter. To finish off your smoothie, add some fresh or frozen fruit for flavour and extra nutrients. Blend it all up and add ice!

Eat Little and Often

The prospect of having to gain weight and eat a lot of extra calories can be quite daunting for some people. Fitting all those extra calories in three meals can be difficult and leave you feeling uncomfortable. Eating little and often spreads the calories out so you can get in enough calories without feeling discomfort. Aim for three meals a day with two or three snacks in between. Choose foods which are nutrient dense, but also high in calories per serving, such as avocado, nuts, peanut butter, granola and dates. Try to avoid snacking on junk food, such as sweets, cakes, crisps and chocolate bars. Although these foods are high in calories, they are low in nutrients!

Sneak in Extra Calories

If you are still having trouble meeting your calorie targets or gaining weight, try sneaking in some extra calories into your meals. Accessorise your meals with calorie boosters, such as coconut oil and extra virgin olive oil, nuts and nut butters, hummus and guacamole. Nut butters have about 90 calories per tablespoon and contain healthy monounsaturated fats, which not only provide you with lots of energy, but a diet high in monounsaturated fats which can overall reduce your risk of heart disease, atherosclerosis (plaque in the arteries), high blood pressure and stroke. Try some peanut butter as a topping for apple, banana or oatcakes as a quick healthy snack in between meals.

Probiotics

Our gut is home to trillions of bacteria, and although many of us consider bacteria as something which is only bad, unhealthy, and disease-causing, some bacteria are actually beneficial, and essential to good health! Friendly bacteria in our gut, such as lactobacillus and bifidobacteria, are essential for a strong immune system and overall health. However, illness, stress and certain medications can disrupt the gut flora. This disruption can cause bloating, nausea and diarrhoea. We can help to restore the balance in our gut by taking a probiotic supplement or eating probiotic rich foods, such as natural yoghurt, sauerkraut and kefir.

Exercise

Most of us associate exercise with weight loss, but it is also really important for people who are looking to gain or maintain their weight.  Strength training, also called resistance training, is really important when trying to build muscle or gain strength. This is a form of exercise which involves using your muscles to contract against a weight or force. The resistance used can be anything from dumb bell weights or simply your own bodyweight.

If you are not keen to try out weight training, there are many other ways to build up your strength and fitness. Activities such as brisk walking, hiking, swimming and yoga are just a few ways we can stay active. It is important to note that exercise not only benefits you physically, but also mentally by boosting mood and reducing anxiety!

Good luck!

Article written by Dr Hazel Wallace

Christmas is A-Coming

christmas-tree-blue-vector-illustrationFor those of you interested in supporting us by buying charity Christmas cards, you can order directly online with CharityChristmasCards.com

CharityChristmasCards.com sell both paper cards and, for those of you who are more green in nature, they also provide online cards to email to your friends and family. They also supply corporate cards so you can put your company name on the front cover.  Up to 50p per card is donated directly to Breathing Matters.

For those of you around the London area, why not come along to our Charity Christmas stall on Friday 25.11.16 11am-2pm at UCH Atrium where we will be selling stocking fillers, jewellery and designer handmade Christmas cards.

If you are interested in purchasing our handmade Christmas cards, which Jane Walker has designed, contact us directly on breathingmatters@ucl.ac.uk

Would you like to find out what type of Christmas charity supporter you are?  Read our article at http://bit.ly/19gNAoH