• £5 – Equipment to take blood for testing antibodies for a  patient with IPF

• £50 – Allows us to grow individual fibroblasts (these are the cells that produce the scarring) in the laboratory from the lungs of patients with IPF to do further studies.

• £500 – Allows us to isolate 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.

• £5000 – Provides all the equipment and running costs for a ‘Western Bot’ which allows us to look at abnormal proteins in the lungs of patients with pulmonary fibrosis.

• £50,000 – 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.

Dr Mikolasch in action

We are delighted to report that, in early February 2014, UCLH diagnosed idiopathic pulmonary fibrosis from a minimally invasive cryoscopic lung biopsy. This is a UK first and was made possible by Breathing Matters. The cryoscopic lung biopsy (CLB) was performed by Dr Theresia Mikolasch (Breathing Matters ‘Lawrence Matz’ Clinical Fellow) under the supervision of Dr Neal Navani at UCLH.  The cryoscope was part-funded by Breathing Matters with monies donated in memory of Ana Timberlake and Dr Mikolasch, who has driven this project forward, was funded by the Lawrence Matz Memorial Fund. 

By working with patients and relatives to address their concerns, Breathing Matters has developed a crucial area of our service to meet patients’ needs. 

This is important for:

1.  The Patient:  who undergoes a day case procedure as opposed to a surgical lung biopsy, thereby avoiding hospital admission, unslightly and painful scar and a chest drain.

2. 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. 

3. Our ILD research programme: We now have access to lung tissue that is removed, but is excess to that needed for clinical diagnosis. 

Where do we go from here?:

-A multicentre study to investigate the role of early CLB in the patient pathway in idiopathic ILD.

-The resulting increase in tissue samples will be used to expand our complementary basic science programme.

Further to Marie’s article on our website at the end of 2013, Marie still keeps her chin up despite ongoing obstacles.  Here is an update that she wanted to share with you for International Day of Happiness, 20th March 2014.

By Marie Maldonado

I was admitted to UCLH on January 27th 2013 and stayed on Ward T08 until February 13th 2013. During this time, my meds were totally changed as we are trying to discover what the ‘nodule’ is that’s been found by CT scan in my right lung. This nodule may be cancerous and has led to Papworth removing me from the transplant list. My extensive research and contacts with lung transplantees all over the world told me that it could be fungal in origin and both Dr Porter and Prof Brown took that on board, and the lab did indeed grow a strange fungus on my sputum. During my first few days on the ward, the team consulted with an expert microbiologist in Bristol and decided which antifungal they would give me. Unfortunately, this new drug (Voriconazole) would be impacted by the Omeprazole which has been shielding me from gastric reflux, part of the Scleroderma package.  The doctors tried removing the Omeprazole from my drug regime and I have been suffering ever since with the most horrible acid reflux/heartburn/indigestion, something that has led to a complete change of diet for me (so perhaps not all bad!) I am now taking Lansoprazole and Ranitidine and the reflux has abated a little, though I am still woken in the night and have to sit chugging Gaviscon for an hour or so.

I asked for a frank talk with Prof Brown about my prognosis and he admitted that I am indeed in end stage fibrosis and basically that I was looking at ‘weeks’. I was discharged with a full care package and now have a carer come in to the flat three times a day as my mobility is limited. I have a wheelchair for hospital visits and my very own ministering angel, who masquerades as my friend, neighbour and ex-colleague, who pushes it for me. To begin with, it was extremely hard to adjust to people letting themselves into my home and doing, very slowly, things that I knew I could do at twice the speed had I only the breath to do them with. Organising the meds has been another challenge as I have nine medications to take in various combinations and at various times throughout the day. However, as time has gone on, it has become much easier as I have been able to get into a routine and as my regular carer has learned what I need doing and how I want it done. (I have turned into an anal mini-Hitler, I’m afraid, sitting like the Queen of Sheba ordering her about.) My friends have been amazing (I never knew I had so many) and I think there have only been two days when I haven’t received a visit, if not from a friend then from a health professional. My social calendar has never been so full. Sometimes, I am grateful when no one is coming as I can then chill out and relax a little more.

It may be because of the meds or it may be the new dietary regime, or it may just be my long held spiritual beliefs bubbling up to the surface again, but I actually feel great!  Indeed, if it weren’t for the fact that I’m very ill, I would be very happy. Hell, I AM very happy! I imagine the doctors think I’m in denial, but I’m truly not; I just have the feeling that, if everything falls into place and the nodule can be seen to be non-cancerous, then I have a very, very, very slim chance of persuading Papworth to put me back on the transplant list and heigh ho, another challenge will begin. (There’s a sense that this period is something of a dry run for what life will be like post transplant, if I ever get that far.) Unfortunately, I don’t think everyone sees it quite this way. The Haringey Palliative Care Nurse whom I have seen has been tremendous as far as practicalities are concerned; she’s obtained bits and pieces of equipment for me and even got my Disability Living Allowance almost tripled. However, her whole focus is on my dying. Let me give you an example: the physio at UCLH arranged for the pulmonary rehab physio from the class I was attending for several months before Christmas to come to my house once a week. He’s another bright young man and he takes me through half an hour or so of gentle exercise with weights, culminating in my ‘walking the hall’. I keep note of how much I do, and each week I increase my score a little or go up a weight. I’m supposed to do this every day, but I truly don’t seem to have the time, plus it is hard to motivate myself when I’m alone. It does make me feel great! When I told the Palliative Nurse about this, she was almost disapproving. I could hear a ‘tut’ and see a shake of the head. I felt she wanted me to stay on the sofa and up the morphine and be comfortable. Unfortunately, Haringey Palliative Care does not go in for any kind of complementary therapies, unlike the Palliatives at UCLH, so my requests for massage, reflexology, etc. have fallen on deaf ears. Luckily, the universe heard my pleas and sent me an aromatherapist who gave me an incredible massage, and yesterday my hairdresser (from Mr Toppers in Tottenham Court Road) came all the way from her home in Brixton to crop my hair. Everything falls into place, like a jigsaw that does itself.

My dietary regime revolves around the reflux and the need not to trigger it. I have taken advice from fellow sufferers and am having some success. No more coffee, chocolate, cheese … in fact, as money is now no object (well, I may as well spend it rather than save for my old age!) I am shopping (or being shopped for) at Planet Organic and Whole Foods Market. I eat only organic, totally healthy food in small portions and I now focus on my food rather than multitasking as I eat. Some of my friends bring me home cooked food to go in the freezer. In fact, the friend coming later today to take me out to Epping Forest is bringing portions of her amazing chicken casserole which we’ll have for lunch before we set off, with a few extra pots to go in the freezer for another day.

I have also taken advantage of having helpers (carers and friends) to tidy and organise my flat, in a very amateur Feng Shui way, to free up energy flow, etc. It works for me, as does surrounding myself with things of beauty. The corners, piled with bits and bobs for years, are being cleared and everything is slowly becoming more organised. It does make a difference. As does practising the Buddhist precept of ‘mindfulness’: organising in my head, for example, what I need to pick up from each room, so that I only have to make one journey.

As far as I can see, end stage fibrosis usually means admission to hospital, possibly an induced coma and then a very quick death. And I wonder if it has to be that way. If more people were able to count their blessings rather than turning their faces to the wall in despair, would their endings at least be easier, gentler and, hard though it is to believe, as enjoyable as mine is proving to be.

We recently lost my Dad, David John de Warrenne, to an awful disease called Idiopathic Pulmonary Fibrosis, and pneumonia.  

Dad was such a lovely and truly wonderful man loved by so many. I couldn’t have asked for a better father. He was also an extremely talented musician, winning top competitions throughout his life and dazzling many with his “spine tingling” performances. He studied with the famous Julius Katchen, the famous concert pianist in his Paris apartment overlooking the Eiffel Tower. Dad, and his fellow pupil and dear friend of over 50 years Anthony Green, at 19 years old were the first white people to perform in Bermuda, casting aside the racial segregation of the times; something they were both very proud of.  

Following this, Dad worked hard all his life, teaching at Trinity School in Croydon for 40 years, arranging, accompanying and writing music for Trinity Boys Choir and the much coveted “DW” choir, the public face of Trinity Boys Choir.

Not only this, but along the way he helped his students and family, not just musically, but with everyday obstacles life threw at them. Especially me, as his son, I always confided in him whenever I needed to and always depended on him.

Dad always approached life in a positive way and never let his illness affect him. Unfortunately, Dad was diagnosed with IPF not long after his retirement which restricted his ability to carry out every day tasks. After many years teaching, it’s so sad that he never got a fair crack at retirement.

Idiopathic means “no reason for”, pulmonary “lung” and fibrosis “scarring” and thus has no explanation for its occurrence. But upon diagnosis, it’s life changing with extremely devastating statistics. Thus, research and testing needs to be continued and advanced and hence why the family and I have chosen “Breathing Matters” as the charity of choice to raise money in Dad’s name. 

All donations in Dad’s name are welcome and greatly received http://www.justgiving.com/AdeW4DdeW. I will also be undertaking a challenge, yet to be decided, in Dad’s name in due course. 

Sleep well my amazing father, love forever, Alex

My Amazing Father was written by Alex de Warrenne

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……!

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! 

September is Breathtember – Pulmonary Fibrosis Awareness Month

 Get out of Breath for Breathtember

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 could mean:

• Doing a colourful 5K run or walk, eg. Run or Dye 5k http://uk.runordye.com/
• Walking over the wonderous London bridges
• Doing a musical 10K run, eg Run to the Beat 10K  http://www.runtothebeat.co.uk/Event
• Completing a Spartan Race http://uk.spartanrace.com/events
• Scaling a mountain
• 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.  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 

REMEMBER TO TWEET YOUR CHALLENGE EVERY DAY #BREATHTEMBER!

On Christmas Eve 2013, pulmonary fibrosis took away the most important person in my life. My grandmother, Surjit Kaur, was my best friend; she gave me unconditional love and support. She was an incredibly loving and kind woman. Every moment of my life has a memory of her, and it’s incomprehensible that she won’t be a part of my future. There is not a day that goes by where my heart doesn’t ache for one last hug. Every single second without her is just incredibly painful.

As part of a trip to South America this year, I have decided to trek the Inca Trail to Machu Picchu in memory of my dear grandmother.  I thought this would be a wonderful opportunity to raise money for a charity that is close to my heart. Breathing Matters is a charity that focuses its attention on various lung diseases and infections, but primarily Idiopathic pulmonary fibrosis. Pulmonary fibrosis is a very rare disease that causes scarring of the lung tissue and in many cases it is fatal as there is no cure. 

Breathing Matters is one of the few charities in the UK that actually funds clinical research at UCL. Their aim in the long run is to find a cure, but they also research ways to prevent the illness as well as making it liveable and manageable. 

If the money I raise can help others avoid the loss of a loved one, then the hellish trek will definitely be worth it. So if you have any spare change, please donate it to Breathing Matters in memory of Surjit Kaur to help those people out there who still have a chance – https://www.justgiving.com/Harpreet-Dhatt/

Thank you very much for taking the time to read this.

You may have ended up here because you scanned a QR code, because someone forwarded you the link, or because I asked you on one of my long runs.

However you ended up here, thank you.

I may not know you. You might be someone who likes to chat with colleagues to make the day pass more quickly, or who loves setting the world to rights over a beer or three; you might own a restaurant or coffee shop and love the banter with your regulars and the joy of discussing a new dish, vintage or blend; you might be a business-person who thrives on using your conversational skills to manage your team, solve problems or close a deal. Alternatively, you might be an experienced athlete, gym-bunny, runner or cyclist, who thrills to the beat of your own heart, both indoors and out; you might be a musician, artist or DJ, creating and sharing your creativity and passion, or that of others, with audiences big and small.

You may be one or many of these things according to time zone and personal preference, but for every single one, you need to breathe. To fill your lungs to capacity and deliver the words and feelings that allow you to connect with others, taste your food, make your legs move, deliver your best and take life by the scruff of the neck. If that’s not how you view the simple act of inflating your lungs, then you are supremely lucky.

My dad was a sportsman and singer, and a teacher for 44 years. I watched him read stories in assemblies to hold a room of over 900 children rapt, and take part in school plays dressed in a tutu and leggings to play the ‘Bad Fairy’ and bring the house down to make the children happy. His contribution to the Suffolk ale industry and the wine-growing regions of France can also not be underestimated…

He worked tirelessly to be the best he could at everything, and everything he did he loved. Nothing was ever “too high, too hard or too heavy” for him to have a go at and he gave life everything – and still does as far as he can. Dad was diagnosed with idiopathic pulmonary fibrosis (IPF) at the start of 2012 and, through absolutely no fault of his own, the things he loves doing and worked to achieve are slowly being taken away because he doesn’t have the breath to do them.

IPF is an illness that is not well-known, and even less well understood, although that is now starting to change. For the sufferer, knowing your lungs are deteriorating is frightening and frustrating; as a family watching it happen, it is heartbreaking and the feeling of powerlessness overwhelming. As a runner, I count every step as a blessing.

It’s thanks to charities like Breathing Mattters and the British Lung Foundation that the research into treatments for IPF has progressed so much in the past year. They have set up a campaign, using the power of Twitter, to try to raise awareness of the illness and their work, and they are trying to get #Breathtember to trend in September.

This is the second year I have supported #Breathtember; I had never used Twitter before last year, but it seemed to go quite well (full story here). This year, I’m going to post a picture on Twitter of a different person holding up the Breathing Matters sign every single day of September, with the #Breathtember tag. I run into work every day and have made friends with a number of people whose routines coincide with my route – they have all been identified as possible photographic targets! All I’m asking is that you follow me on Twitter and re-tweet these pictures to your followers and encourage them to re-re-tweet them to spread the word. Alternatively, share this page and the photos via any channel you prefer. I’m not asking for money, just awareness, but social media is powerful stuff and the simple act of re-tweeting/sharing every day would mean the world to me.

Time flies. When you’re having fun and when you’re trying to stop it slipping away. I can’t believe it’s been a year since the last time I asked for help with this, because so much has changed and the finishing line I never wanted to reach seems to be rapidly coming into sharp relief. We also have an oxygen machine called Brian, but that’s a whole other story.

Thank you so much for your time, hopefully we’ll meet in the Twittersphere or in person. If not, then I hope you love the things you love just a bit more from now on, for the very fact that you can still do them.

Vicky xx

What is nuttier than taking part in a Tough Mudder? It’s taking part in another one!

After raising £4,000 in last year’s half marathon army assault event, Adam Clark has got another team together to do it again! They are doing this in memory of Adam’s father, Jim Clark.

The Tough Mudder is a hardcore 10-12 mile endurance running event over an obstacle course which is designed by Special Forces soldiers to test your all around strength, stamina, determination, and camaraderie.  Obstacles include Artic Enema, Sewage Outlet and Electric Eel – we will leave this to your imagine …

If you would like to support Adam and his team, please visit the team’s witty tongue-in-cheek Justgiving Page – https://www.justgiving.com/you-mud-be-joking-2014/

Good luck Adam!

When:    Sunday, 12th June 2016

Where:    Lee Valley VeloPark

Queen Elizabeth Olympic Park

Cyclotopia 2016 gives you an incredible opportunity to visit Lee Valley VeloPark, bringing together three cycling disciplines of road racing, mountain biking or track cycling in the iconic Velodrome in a bespoke charity cycling event – made for you!

• Be an Olympian for a day!
• Follow the world’s top cyclists at the UK’s leading cycling hub – and raise lots of money for Breathing Matters!
• This event has something for everyone from complete novices, families to experienced cyclists.
• We will have competitions and prizes on the day.  Bring a team of spectators to cheer you along.
• Bikes and helmets are available at the VeloPark and will be within the price (height restrictions apply).
• Kids (under 18) and spectators go free!

•    Road Circuit

How many times can you go around the smoothest one mile road circuit? 1, 5, 10, 15 or 20 miles?

How fast can you complete the road circuit? Timing tags available.

Suitable for all levels. Minimum height 4’5″/102cm. Great for children. Bikes and equipment included.

Registration: adults £20, families £40. This is a sponsorship event – please raise as much as you can!

•    Mountain Trail

Challenge yourself to conquer 5 miles of off-road traffic-free mountain bike trail.  Not for the faint hearted!

Suitable for all levels. Minimum height 4’5″/102cm. Minimum age 9 years.

Bike and helmet available at no charge for over 9 years of age. Can bring own mountain bike.

Registration: adults £20, families £40. This is a sponsorship event – please raise as much as you can!

•    Great Value Velodrome Package

Experience the Velodrome and cycle on the same track where Sir Chris Hoy and his Team GB and Paralympics GB teammates received their Olympic Gold medals in 2012. This is the fastest Velodrome in the world! Includes a 75 minute session on the fastest track in the World with expert coaches and exciting timed laps. The Velodrome package also gives entry to road and mountain bike trails.

For all levels. Age 12 and upwards.

Velodrome package: £65. This is a sponsorship event – please raise as much as you can!

*** PLEASE REGISTER HERE ***

This bespoke event is a great way to support Breathing Matters and other UCLH Charity funds, and we want as many people to join us to raise awareness and money.

Lung disease is one of the three biggest killer disease areas in the UK, together with heart disease and non-respiratory cancers. Furthermore, the UK has the fourth highest mortality rate from lung disease in Europe.

Overall, the burden that lung disease places on our nation’s health and health services is immense – on a par with non-respiratory cancer and heart disease. Yet the amount of resources and attention invested in tackling lung disease trails behind these other disease areas. This is further evidenced by the fact that mortality figures for lung diseases are roughly the same now as they were 10 years ago, yet for heart disease this has fallen by 15% in this same period of time.

The British Lung Foundation funded a three-year epidemiological research project titled The Battle for Breath– the impact of lung disease in the UK. The aim of this was to elucidate the true extent of the burden of respiratory disease in the UK and hence be able to serve as a valuable resource for policymakers, researchers, health care providers as well as the general public.

Their findings pertaining to IPF and bronchiectasis are summarised below:

IPF:

Idiopathic pulmonary fibrosis (IPF) is more than twice as common as National Institute for Health and Clinical Excellence (NICE) states in its official guidance. It is 50% more common in men and around 85% of diagnoses are made in people aged over 70. Around 32,500 people in the UK live with IPF and there are around 6,000 new cases diagnosed a year. Overall, 5,300 people die from IPF each year.

Bronchiectasis:

Around 210,000 people in the UK were living with bronchiectasis in 2012. This is at least four times higher than the estimate commonly used by the NHS. Other studies have suggested an even higher number and more research is required to confirm the true prevalence of the disease and to clarify whether bronchiectasis is becoming more common, or being diagnosed more accurately.

Around 35% more women than men are diagnosed with bronchiectasis each year. In 2012, bronchiectasis was over 20% more prevalent in the least deprived communities than in the most deprived. From 2008 to 2012, recorded deaths from bronchiectasis went up by 30%: from 1,150 to 1,500.

For more details, you can access the full report on https://www.blf.org.uk/what-we-do/our-research/the-battle-for-breath-2016 .

Written by Dr Aemun Salam, UCL Respiratory

The post Battle for Breath BLF Study appeared first on Breathing Matters - UCL Respiratory.

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The ‘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?

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.
• 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.

The post Don’t Let Flu Catch You This Year appeared first on Breathing Matters - UCL Respiratory.

For 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

The post Christmas is A-Coming appeared first on Breathing Matters - UCL Respiratory.

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!!!

The post Gold Quiz: Autumn 2016 Newsletter appeared first on Breathing Matters - UCL Respiratory.

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

The post Gaining Weight and Staying Strong with Lung Fibrosis appeared first on Breathing Matters - UCL Respiratory.

We are truly indebted to all our fabulous supporters; we exist because of you!  Here are some of the amazing fundraising events you organised and helped with last year:

Cyclotopia Charity Cycle Event, Lee Valley Velodrome 12.6.16

Christmas Concert, St Paul’s Church, Covent Garden 9.12.16

Breathing Matters Charity Stalls x 6

• Tough Mudder
• London Marathon
• Bundles of bike rides, including the Croydon to Torquay Cycle
• Coast to Coast Walk
• Ironman Austria
• Yorkshire 3 Peaks
• Skydives
• Brighton Marathon
• Bristol Half Marathon
• Prudential 100
• Zumbathon
• Great North Run
• Cyprus Half Marathon
• Swim Serpentine
• London 10K
• Marlow River Swim
• Jersey Triathlon
• Grim Reaper Ultra Marathon
• Birthday party donations
• Great Birmingham 10K
• Panto … oh yes we did!

PLUS MANY MANY MORE!!!!

The post Thank You For Your Fundraising During 2016 appeared first on Breathing Matters - UCL Respiratory.

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The post New Year Offer for Cyclotopia! appeared first on Breathing Matters - UCL Respiratory.

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]

The post Cyclotopia – because Cycling Matters appeared first on Breathing Matters - UCL Respiratory.