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Fighting pulmonary fibrosis and infection

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  • 04/12/17--08:06: 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 […]

    The post Every Breath You Take appeared first on Breathing Matters - UCL Respiratory.


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  • 09/16/16--06:21: A Present for #Breathtember
  • To celebrate #Breathtember, 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. Kids (under 18) go FREE for the Cyclotopia Package! To register, visit: http://bit.ly/2cKDKZq Hurry though, before they sell out!  

    The post A Present for #Breathtember 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? 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: […]

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


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  • 11/08/16--09:31: Christmas is A-Coming
  • 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.


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    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.


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    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 […]

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


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    To 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! Save Save Save Save Save

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


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    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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    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.


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  • 04/12/17--08:06: 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 […]

    The post Every Breath You Take appeared first on Breathing Matters - UCL Respiratory.


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    Colin Bathe ran this year’s London Marathon in support of Breathing Matters to raise funds and awareness of pulmonary fibrosis. This is his personal account of the day. London Marathon. An iconic race that everyone has heard of and one that most runners and many non runners say that they would like to do one day. Include me in that. 6:00 am: This is still the middle of the night in my book and not a suitable time for the alarm clock to go off. However, it is race day so time to get up, have a rather unexciting cheese sandwich for breakfast and then after a final kit check get a ride to the Surbiton station from Nik to start my journey to the start. So why run marathons and the London Marathon in particular? I’ve now done 5 marathons and 10 ultras (races longer than marathon distance) so I should be able to answer that easily. I can’t though. I could say that I love doing them (and I do) but generally end up finishing in a considerable amount of pain which could last for many hours and who can love that? I could mention getting fit but […]

    The post London Marathon 2017: a Runner’s Personal Race Report appeared first on Breathing Matters - UCL Respiratory.


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    September is #Breathtember – Global 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 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  Save

    The post Get out of Breath for #Breathtember this September appeared first on Breathing Matters - UCL Respiratory.


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    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!

    The post You Got out of Breath for #Breathtember! appeared first on Breathing Matters - UCL Respiratory.


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  • 10/31/17--03:34: 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 […]

    The post Show and Tell Meetings appeared first on Breathing Matters - UCL Respiratory.


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      For our Autumn 2017 Newsletter, please click here    

    The post Autumn 2017 Newsletter is OUT NOW appeared first on Breathing Matters - UCL Respiratory.


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  • 12/19/17--04:18: Challenge Yourself in 2018
  • Sometimes, a cycle at a 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 www.globaladventurechallenges.com, but here’s just a few fabulous examples:   Nepal, Everest Base Camp Trek: 8-25.3.18, 15.11-2.12.18, 7-24.3.19, 14.11-1.12.19 Minimum sponsorship: £399 + £3,750 + airport TAX (2018) £449 + £3,750 + airport TAX (2019) Self-funding: £399 + £1,875 + airport TAX (2018) £449+ £1,875 + airport TAX (2019)   Tanzania, Kilimanjaro, Machame Trail Trek: 11-12.10.18, 20-30.6.19, 19-29.9.19 Minimum sponsorship: £449 + £4,100 + airport TAX (2018) £475 + £4,150 + airport TAX (2019) Self-funding: £449 + £2,050 + airport TAX (2018) £475 + £2,075 + airport TAX (2019)   China, Great Wall Trek: 12-20.5.18, 8-16.9.18, 19-27.10.18, many more in 2019 Minimum sponsorship: £299 + £2,700 + airport TAX (2018) £299 + £2,700 + airport TAX (2019) Self-funding: £299 + £1,350 + airport TAX (2018) £299 + £1,350 + airport TAX (2019)   USA, Rock the Canyons: 12-19.5.18, 15-22.9.18, 11-18.5.19, 14-21.9.19 Minimum sponsorship: £449 + £3,650 + airport […]

    The post Challenge Yourself in 2018 appeared first on Breathing Matters - UCL Respiratory.


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    We would like to thank to you all for your loyal support over the last year and for giving so much of your time and funds.  Since our launch in January 2011, you have helped us raise £500K – without you, this simply would not have been possible.  We thank you! So, what have we done with all your raised funds?  We have spent this wisely and here are a few important areas of research where your money has been focussed in 2017: We recruited a fabulous clinician, Dr Helen Garthwaite, to be our Mark Hulme Clinical Fellow. Helen has pioneered the use of anticoagulation in IPF and has established the first clinical trial of directly acting antithrombin agent, dabigatran, in IPF. We have now started recruiting to this study and the first two patients have completed the trial. We hope that the results will be available shortly and may provide the impetus for a much larger study. We held a patient and public event for IPF.  There were presentations on our research projects including our work on rheumatoid arthritis associated ILD, platelet and clotting in IPF, genetics of IPF and novel imaging in IPF.  We also met with old and […]

    The post 2017 Roundup – What You Helped Us Achieve appeared first on Breathing Matters - UCL Respiratory.


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