fighting
pulmonary fibrosis

and infection

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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

 

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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Year in Review – 2016

Thank You For Your Fundraising During 2016

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!!!!

 

 

 

 

Travel the Globe for Charity

Sometimes, a cycle at a nearby national park, a coffee morning at your local cafe or a 10K run is just not enough of a challenge.  Sometimes, you need to go further afield!

Breathing Matters has teamed up with Global Adventure Challenges who offer some amazing charity challenges. There are so many international challenges to choose from at http://www.globaladventurechallenges.com/international, but here’s just a few examples:

Grand Canyon Trek: 13.5.17-20.5.17, 16.9.17-23.9.17

Minimum sponsorship and fees: £3500 + £449 + airport TAX

Self-funding and fees: £1750 + £449 + airport TAX

Great Wall of China Trek: 7.10.17-15.10.17

Minimum sponsorship and fees: £2598 +  £349 + airport TAX

Self-funding and fees: £1299 + £349 + airport TAX

Zambia, Zambezi Raft Challenge:  9.9.17-16.9.17

Minimum sponsorship and fees: £3800 + £399 + airport TAX

Self-funding and fees: £1900 + £399 + airport TAX

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London to Paris Bike Ride: 7.6.17-11.6.17, 19.7.17-23.7.17 (Tour de France Special), 16.8.17-20.8.17, 13.9.17-17.9.17

Mininum Sponsorship + fees: £1560 + £125 + airport TAX

Self-funding and fees: £780 + £125 + airport TAX

Morocco, Sahara Desert Trek: 2.11.17-7.11.17

Minimum sponsorship + fees: £1830 + £199 + airport TAX

Self-funding + fees: £915 + £199 + airport TAX

Kilimanjaro to Ngorongoro Crater Cycle: 14.10.17-22.10.17

Minimum sponsorship + fees: £3850 + £399 + airport TAX

Self-funding + fees: £1925 + £399 + airport TAX

There are two ways of funding your challenge; minimum sponsorship (option A) or self-funding (option B).

Option A – Raising a Minimum Sponsorship

  • You pay the Registration Fee to Global Adventure Challenges and then raise the minimum sponsorship for Breathing Matters. You can set up a Justgiving Page from our home page (https://www.justgiving.com/breathingmatters)
  • You send 80% of the minimum sponsorship and pledges for the remaining 20% to Breathing Matters at least 11 weeks prior to the departure date of the Challenge.
  • Breathing Matters will be invoiced by Global for the balance of the Challenge 10 weeks prior to departure.
  • All outstanding sponsorship should be sent to us within six weeks of completing the Challenge. We would be grateful if you could try and raise as much as you can over the minimum sponsorship target as every penny of this is what Breathing Matters will receive.  The more you raise, the more research work we can do and the more your challenge will have been worthwhile.

Option B – Self-Funding Option

  • You send the Registration Form to Global Adventure Challenges, together with the Registration Fee.
  • Eleven weeks prior to departure, an invoice will be sent to you for the cost of the Challenge.
  • Although there is no minimum sponsorship target for this option, we would encourage you to raise as much as possible for Breathing Matters (via https://www.justgiving.com/breathingmatters). Once again, the more you raise, the more research work we can do and the more your challenge will have been worthwhile.

If all the above fills you with dread, why don’t you check out many more challenges including those closer to home in the UK on http://www.globaladventurechallenges.com/uk or Sport for Charity

Always Remember: Breathing Matters!

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New Year Offer for Cyclotopia!

group-shot-with-mark-cTo celebrate the New Year, 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 Velodrome in the amazing Lee Valley VeloPark within the Queen Elizabeth Olympic Park.

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 Competition – Prize for the fastest!
  • 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

Velodrome Package includes:

  • A training session at the Velodrome, the fastest track in the world, with expert coaches and exciting timed laps – with a special guest!
  • All above options from the Cyclotopia Package.

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!

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Just Give It Up!

It’s another New Year, so it’s time for some self-improvement. Have you made New Year’s resolutions before, but failed to keep them? I would argue that a resolution is too restraining and negative, I would prefer to focus on adopting habits that keep you healthy. Let’s concentrate on the smokers amongst you. You know who you are?  Have you tried quitting before or have you persuaded yourself that your genes will protect you from the ravages of cigarettes?

First, think of why you should stop smoking and then, when you have decided to (and this might be the difficult step), take the first teeny weeny step. You do not have to throw all your cigarettes away for good – although that might be one approach. Take a small step, develop a new habit and, once it is taken, you are on the road to being an ‘ex-smoker’.  Keep taking little steps that help you develop little habits and you will achieve your aim.

Take Small Steps

What small steps can you take?  Try these:
1.  Develop a disgust for cigarettes. Spend 5 minutes each day imaging the toxic smoke filling your lungs and turning them black, and large globs of fat being deposited in the blood vessels of your brain, heart and legs. The surgeon teeing you up for an amputation operation, etc. Remind yourself of this every time you smoke.

2.  Toss a coin each day. Heads you smoke that day, tails you don’t.   Or, if that is too difficult, ‘tails’ you don’t smoke until midday or something similar. Keep this going for a year and you may reduce your intake by 50% (provided you don’t smoke twice as many on the smoking days).  On smoke-free days, have a shower, wash your hair, put on clean clothes and enjoy the fresh smell that you exude.

3.  Take fewer draws from each cigarette (you are going to have to be honest here).

4.  As an incentive, you could get yourself sponsored for giving up smoking and help a charity at the same time – a ‘Charity Quit’, if you will!

5.  Make the first step to getting expert help.  You can get excellent help from the following:

No matter how small your first step, it is a first step and it will be difficult – if it wasn’t, everyone would do it.  Keep in mind the pluses of being an EX-smoker.  Reward yourself for even a small achievement (not with a cigarette please).

Here are some of the reasons why you should quit (this is taken from http://smokefree.nhs.uk/why-quit/health-and-confidence/

Health Benefits

  • You will reduce your risk of developing illness, disability or death caused by cancer, heart or lung disease.
  • You will reduce your risk of gangrene or amputation caused by circulatory problems.
  • You will protect the health of those around you by not exposing them to second-hand smoke.
  • You will reduce the chances of your children suffering from asthma or glue ear.
  • You will improve your fertility levels and your chance of a healthy pregnancy and baby.
  • You will improve your breathing and general fitness.
  • You will enjoy the taste of food more.

Your lifestyle WILL improve (after the short term discomfort)

  • You will save money – as much as several hundred pounds a month, if you’re a heavy smoker.  Perhaps some of this ‘spare’ money could be given to charity!
  • You will no longer smell of stale tobacco.
  • The appearance of your skin and teeth will improve.
  • You will feel more confident in social situations – you won’t be worrying about the second-hand smoke you create anymore.
  • As a non-smoker, you may even find you get approached more often by potential new friends and partners when out socialising.
  • Your home will smell fresh and you will no longer be staining your walls with tar.
  • You will reduce the risk of fire in your home.

GOOD LUCK!

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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