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Get out of Breath for #Breathtember this September

September is #Breathtember – Global Pulmonary Fibrosis Awareness Month

 Get out of Breath for #Breathtember

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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

 

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! 

 

Breathing Matters’ New Lawrence Matz Clinical Research Fellow

We are delighted to announce that Dr Theresia Mikolasch has been appointed to the post of Lawrence Matz Clinical Research Fellow.

This is such an important appointment.   Our vision is to change the pathway of patients with lung fibrosis.  Many different diseases cause pulmonary fibrosis (PF) and they all have different treatments. We want to find patients early, and diagnose them more accurately so that we can give them the right treatments and avoid using unhelpful medicines that may cause harm.  We wouldn’t treat cancer without a biopsy and we feel that the same should apply to our PF patients.   However, open lung biopsies are painful, require a 3 day stay in hospital and may be dangerous.  For these reasons, many physicians choose to rely on information form CT scans and bronchoscopies to make a diagnosis.

But how will we ever learn anything more about this awful disease?   We are hoping to develop a programme of early lung biopsy in ALL patients with PF with a novel and less invasive approach using our cryoprobe. Cryoscopic biopsy is performed as a day case under a deep sedation through a bronchoscope. We believe that patients will be safer, will suffer none of the long term sequelae (such as pain in the chest wall) of a surgical biopsy.  Dr Mikolasch’s appointment will allow us to get cryoscopic biopsies up and running at UCLH, and we will be the first hospital in theUKto do this for PF.

We can then perform a proper study to compare the results of surgical versus cryoscopic lung biopsies. If we show that the cryoprobe is safe and we can get as much information from the samples as we do from the surgical biopsy, then we will be all set to change the way patients with PF are looked after.  We will be able to ensure that each patient will have a more accurate diagnosis so that we can give them the full facts on their treatment and disease.  We will also have many more samples of PF lung available from many different patients to understand why the disease happens and how we can prevent it much earlier.  

Dr Theresia Mikolasch says, “I have taken time out of my respiratory higher training programme inCambridgeto join the prestigious respiratory research team at UCL.  This post has only been made possible by all your generous donations to Breathing Matters!”

Lawrence Matz was one of the co-founders of Breathing Matters who sadly died in August 2011 whilst awaiting a lung transplant for PF.  This post has been made possible through generous donations by his family and friends.

WE DO STILL NEED YOUR HELP!  Breathing Matters has been able to fund Dr Mikolasch’s research for one year only.  She has already made great leaps, but we really need to fund her for another two to three years to get meaningful results from her work.  If you would like to help fund her research, please email Donna Basire at breathingmatters@ucl.ac.uk

 

 

 

Stark Facts about Pulmonary Fibrosis

  • 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. 

 More Pulmonary Fibrosis Statistics

PLEASE HELP US CHANGE THESE STATISTICS!!!

 

[Information taken from Intermune]