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Show and Tell Meetings

We have been busy this autumn meeting our fabulous supporters and patients and presenting our research work.

We had two separate patient/supporter meetings; one for bronchiectasis, and one for pulmonary fibrosis to celebrate #Breathtember (Pulmonary Fibrosis Awareness Month).

At the Pulmonary Fibrosis/Interstitial Lung Disease event, Dr Porter along with our fabulous clinical fellows and scientists presented their integral and very interesting research work into PF.

Presentations included:

  • Dr Akif Khawaja:  The role of neutrophils in Interstitial Lung Disease: a novel target for treatment.
  • Dr Deborah Chong: The role of platelets in Interstitial Lung Disease.
  • Dr Theresia Mikolasch: The first UK non-invasive lung biopsy service.
  • Dr Theresia Mikolasch: Using Cryobiopsy to assess Inhaled drug delivery to the distal lung.
  • Dr Manuela Plate:  Can we use circulating DNA to tell us about genetic changes in the lung?
  • Dr Wes Wellard:  Finding new genetic mutations in patients with IPF.
  • Dr Jagdeep Sahota:  The role of mucins in IPF.

After lunch, the focus group discussed future areas of research into interstitial lung disease.

The scientists loved meeting you and one scientist said that meeting you helped ‘motivate us to do more and do it better and quicker’.

 

At the Bronchiectasis Evening, Professor Brown explained what we know about bronchiectasis and what we still need to find out. And, importantly, how Breathing Matters can help. This was followed by a lively Q+A session when Professor Brown answered some in-depth questions on the treatment of the disease.

We were also treated to Jane Walker’s personal and touching account of coping with her condition. Jane organises our annual Christmas Concert and we were lucky to have one of the Holst Singers along with a representative from Pharma Profile who has given a donation towards the costs of staging this concert, with us that evening.

It was so lovely to meet so many of you in person and we look forward to seeing many of you at our Christmas Concert at St Paul’s Church in Covent Garden on Friday, 8th December 2017.

These meetings show how Breathing Matters have helped research into both lung diseases since our inception in 2011, and it is thanks to all our fundraisers and donors that this has been achieved.

We could not have done this without your support – thank you!

 

You Got out of Breath for #Breathtember!

Thank you to all of our supporters who Got Out Of Breath for #Breathtember last month to help raise awareness of pulmonary fibrosis during September’s world PF awareness month.

From hiking, cycling, climbing to giving up fizzy drinks.  You all did your best to spread the word about pulmonary fibrosis.

Our #Breathtember twitter champion this year was ….. Steve Wright who walked a fantastic 50 miles during the month.

And why did we do this … here’s why:

  • Men are nearly twice as likely as women to suffer from IPF.
  • There are 5000 new cases of IPF every year in the UK.
  • 50% of IPF sufferers die within 3 years of diagnosis.
  • More than 30,000 people will be diagnosed with IPF in the 27 EU countries each year. 
  • IPF is more common than all leukaemias conbined. 
  • Most patients are diagnosed 1-12 years after their first symptoms. 
  • 5 million people worldwide have IPF. 

We need more funding to change these statistics.

Thank you for your help during #Breathtember … let’s make a difference together!

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 – Last Few Days For Early Bird Tickets

Cycling Fun   Raising Funds

We are offering Early Bird tickets (at 2015 prices!) for our fabulous cycling fundraiser, Cyclotopia, at the Lee Valley VeloPark on Sunday. 11th June 2017.

Experience an action-packed family fundraising day out at the iconic Olympic Velodrome facilities at our Fun Day for all ages!

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

Hurry though, before they sell out!

[Cartoon kindly adapted by @RosAsquith from her book, ‘Max the Champion’]

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Gold Quiz: Autumn 2016 Newsletter

1964 James Bond movie – Goldfinger

Pyrite – Fools Gold

1849 California event – Gold Rush

What King Midas had – Golden Touch

Kanye West song – Gold Digger

Former name of Ghana – Gold Coast

Oil – Black Gold

Francis Drake’s ship – Golden Hind

San Fran bridge – Golden Gate

What our supporters have – a Heart of Gold!!!

 

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

 

Don’t Let Flu Catch You This Year

bug-chasing-manThe ‘flu, or influenza virus can cause infections all year round, but in the UK, it is most common in the winter. There are many strains, some of which are worse than others, such as swine ‘flu (H1N1 strain) which tends to have a more rapid onset, high fevers and stomach upset and has caused fatalities, often in previously fit adults.  ‘Flu affects 10% of the population each year, but rises to 25-30% during an epidemic. In contrast, adults have approx 2 to 3 colds per year and children 5 to 6.

Do I Have ‘Flu or a Cold?

Features of ‘Flu Features of a Cold
  • Symptoms appear suddenly
  • Leaves you exhausted and unable to move, affecting the whole body
  • Can cause complications, including pneumonia, sometimes fatal
  • Lasts for one week, then you get better
  • Symptoms appear gradually
  • Affects only nose, throat, sinuses and upper chest
  • Still able to function
  • Recover fully in a week

Vaccination Against the ‘Flu

Anyone can get the ‘flu and, the more a person is in close contact with people who have the virus, the more likely they are to get it.  Certain at risk groups are advised to have a ‘flu vaccination. They include:

  • Everyone over the age of 65.
  • People of any age with lung diseases, heart disease, kidney disease, liver disease, diabetes or lowered immunity.
  • Anyone living in a residential or nursing home.
  • Carers of those at risk.

The UK is fortunate to have a safe and effective vaccination against the ‘flu, which is provided free of charge by the NHS. Those most at risk are advised to have a vaccination every year. This is because the ‘flu virus changes slightly every year.  Despite popular belief, the ‘flu vaccination can not give you ‘flu. It’s true that some people experience symptoms of a heavy cold at the same time or just after they’ve had the ‘flu jab – this is simply a coincidence and the symptoms are caused by one of the many common cold viruses in the autumn and winter.  It is still possible to suffer heavy colds after a vaccination, as the ‘flu jab only protects people from the ‘flu virus, not other viruses.

The ‘flu vaccination is available from October each year.  Anyone who thinks they need it should talk to their doctor or nurse.

How to Treat the ‘Flu

Antibiotics are of no use in treating ‘flu. Anti-viral medication is available from the GP for at risk groups, but it needs to be taken early on in the disease to stop the virus multiplying, and may only reduce the symptoms rather than treating the infection.

The best ways to treat the symptoms of flu are:

  • Get plenty of rest. The body uses a lot of energy fighting infections, so resting for the first couple of days gets it off to a good start.
  • Keep warm.
  • Make sure you drink plenty of water to avoid dehydration, and try hot water with lemon, ginger and honey to relieve symptoms such as sore throat.
  • Take paracetamol or anti-inflammatory medicines such as ibuprofen to lower a high temperature and relieve aches.

Always contact your doctor if you’re not getting better after a few days, if you’re unduly short of breath or if you’re coughing up blood or large amounts of yellow or green phlegm.

How to Keep Healthy and Avoid Getting the ‘Flu

  • Keep your immune system strong by eating a healthy diet.healthy-man
  • Take regular exercise.
  • Get enough rest and relaxation.
  • Do not smoke.
  • Take regular vitamins and bump up your vitamin C.
  • Wash your hands often and keep a bottle of antibacterial handclean around.
  • Avoid people who are coughing and sneezing, especially if they’re not covering their mouth and nose.
  • Use and bin your tissues.

Planning a Holiday Abroad? … Are You Fit to Fly?

Flying in an aeroplane is the equivalent to being 5000 to 6000 feet up a mountain.  Think of a mountain twice as high as Ben Nevis, or being a third of the way up Everest.  The air is ‘thinner’ because the pressure is less and, as a result, there is less oxygen.  In fact, the concentration of oxygen falls from 21% at sea level, to about 15%.  Most people will tolerate this, but, if you already have problems breathing, this will become worse.

For those respiratory patients who do not normally need oxygen: Patients who can walk 100 metres on the flat without needing oxygen, and at a steady pace without feeling short of breath, are very unlikely to have a problem in-flight.  These patients are considered safe to fly according to the guidelines issed by the Civil Aviation Authority.  If you can not do this, you should talk to your doctor about the safety of travelling by air.  They will be able to carry out studies where they simulate the oxygen concentration in the aeroplane cabin.  You will be sitting comfortably wearing a close fitting mask that delivers oxygen at a reduced concentration of 15%  They will see what happens to your oxygen saturations over a period of time.  They can then recommend whether or not you need oxygen during the flight.  Short haul flights are less hazardous than longer ones.

For those respiratory patients that already need oxygen: Talk to your doctor about how much oxygen you will need in-flight.  This may be a higher flow rate than you normally use.  You must also remember to arrange oxygen to be available at your holiday destination.  Your local respiratory nurse will be able to offer you advice on this.

For all those patients that need oxygen on the flight: Remember to let the airline and/or travel agent know in good time, ideally a month before you fly.  Some, but not all airlines, charge for the oxygen and it might be worth planning your flight with an airline thay does not charge.  Do not rely on the airline having oxygen avalable at the last minute; the oxygen the airlines carry is for emergencies and would not last very long.

Final checklist once oxygen is sorted … don’t forget:

  • Check your insurance policy covers you for medical costs and return home.  The British Lung Foundation has a list of insurance companies that will insure patients with lung diseases.
  • Bring your EHIC [European health insurance card] if travelling to the EEA or Switzerland.  Phone 08456 062030 or visit www.dh.gov.uk/travellers.
  • Arrange disabled assistance at the airport if required.
  • A letter in your hand luggage detailing your condition and medications.
  • Medication in your hand luggage plus one spare week’s worth.
  • And, most impotantly, don’t forget to have fun! 

 

IPF: The Game Is On, The Game Is Changing …

Until recently, we have had very little to offer patients with Idiopathic Pulmonary Fibrosis (IPF).  The disease is on the increase, tends to affect men in their late middle age, and has a prognosis worse than most cancers (50% of patients will die within three years of diagnosis).

The approach to the patient with presumed IPF, appears primitive compared to the sophisticated approach to the cancer patient. No-one would treat a cancer patient without a biopsy, but only a tiny minority of IPF patients undergo lung biopsy because of the morbidity and mortality associated with this surgical procedure; as a result, most patients receive a diagnosis of IPF on the basis of a history and typical CT scan results. There is a wealth of drugs on offer for the patient with cancer, but until now, there has been limited and conflicting evidence that any drug can alter the course of IPF. 

Until now  ……….  Last week at the American Thoracic Society, new data was released from a number of clinical trials that are published in the latest edition of the New England Journal of Medicine, the most established and reputable international medical journal. 

The studies published included the INPULSIS™-1 and -2 trial (Nintedanib, previously BIBF-1120 in IPF) and the ASCEND trial (Pirfendione in IPF).

Nintedanib is an investigational small molecule tyrosine kinase inhibitor in development by Boehringer Ingelheim for IPF.  It targets growth factors, which have been shown to be potentially involved – the vascular endothelial growth factor receptor (VEGFR), fibroblast growth factor receptor (FGFR), and platelet-derived growth factor receptor (PDGFR).

The two Phase 3 INPULSIS™ Trials of Nintedanib involved a total of 1,061 people with mild to moderate IPF treated for 52 weeks, and showed that Nintedanib reduced the lung function decline compared to placebo. The studies did not follow enough patients for long enough to comment on effects on mortality, but there was a trend towards reduced death rates in the Nintedanib group. The most frequent adverse event was diarrhoea, affecting 61.5% of patients on Nintedanib. 

However, before we get too excited, the patients in INPULSIS™ all had reasonable lung function (average lung capacity was 80% of that predicted and around 2700mls); the lung volume lost in the treated group over a year was 114ml compared with 228ml in the untreated group.  We are talking about small volumes, 114ml ~4% of the total lung volume saved over a year – or the same volume as one third of a can of coke out of a total of nearly 3 x 1 litre bottles. Will this translate into a serious impact on exercise ability and life expectancy?  Will there be effects on mortality given that there were no effects on acute exacerbation frequency? What will be the effect on patients with moderate to severe disease, the ones that are not caught early and perhaps have more progressive, aggressive disease?

The ASCEND trial was the fourth Phase 3 study to look at the effect of Pirfenidone (Esbriet) in 555 patients with IPF.  The American FDA has not licensed this drug, thought to act by inhibiting TGF β1, because the results of the first three trials in IPF were mixed. In the ASCEND trial, Pirfenidone reduced the one year rate of decline in FVC, with evidence, from pooling data from all four studies, that it may also reduce mortality. The patients in ASCEND had worse disease than in INPULSIS™ which may explain why they declined more quickly. Pirfenidone saved ~140mls of lung function per year.

Tempering the enthusiasm of the positive studies, is the realisation that the drugs didn’t make people feel better, stop disease progression, cure the disease or reverse the fibrotic damage – the ultimate therapeutic goals.  Coming with these sobering thoughts was the report of PANTHER-IPF.  Disappointingly, N-acetylcysteine or NAC was shown not to slow the rate of decline in FVC (although it may reduce the toxicity of prednisone and Azathioprine in IPF). However, one drug did offer some promise. FibroGen presented their Phase 2a study of FG-3019, an investigational monoclonal antibody that inhibits connective tissue growth factor (CTGF).  The trial recruited 37 patients with mild to moderate IPF of whom 33 completed 48 weeks of treatment. After 48 weeks of treatment, 12 of the 33 patients (36%) had improved fibrosis (unheard of in IPF before now) and two patients had stable fibrosis. This means that 14 patients (42%) had improved or stable fibrosis, improved lung function and felt better. Eighteen of the 33 patients continued FG-3019 treatment for a second year, and four continued to improve, but the rest worsened.

So where does that leave the patient with IPF and his clinician as the nihilistic approach begins to disperse?  What should we do with the mounting evidence that immunomodulation (with Cyclophosphamide and Rituximab) although beneficial in inflammatory pulmonary fibrosis (PF), such as that associated with rheumatoid arthritis and scleroderma, may increase mortality in IPF?  

More than ever before, we believe that it is essential to make a confident diagnosis in all patients with PF, to separate out those with IPF from those with inflammatory pulmonary fibrosis, and, in many cases, this requires a biopsy of the affected lung.   Our own work establishing non-invasive bronchoscopic cryoscopic lung biopsy to rigorously identify those with IPF, from those with other forms of PF, is set to be a game changer.

Breathing Matters has funded the research that has set the stage for a full application to the NIHR for a proper study on the role of cryoscopic lung biopsy (CLB) in the management of PF of unknown cause. It no longer seems fanciful to imagine a time when a patient with PF will be worked up with a scan and a CLB that will provide an individualised diagnosis; this result will guide the clinician on how best to manage their patient.

 

Although we are behind our cancer colleagues, (the standard of diagnosis and treatment options that they offer their patients is superior to that offered to patients with PF), the distance is closing, and it will not be long before they feel our toes on their heels!   The game is on……!