fighting
pulmonary fibrosis

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Autumn 2016 Newsletter

To view our Autumn Newsletter, please click here

Gold Quiz: Autumn 2016 Newsletter

1964 James Bond movie – Goldfinger

Pyrite – Fools Gold

1849 California event – Gold Rush

What King Midas had – Golden Touch

Kanye West song – Gold Digger

Former name of Ghana – Gold Coast

Oil – Black Gold

Francis Drake’s ship – Golden Hind

San Fran bridge – Golden Gate

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

 

Support Our Christmas Appeal

xmas-appealWould you like the opportunity to make a difference this Christmas and take part in our Christmas Fundraising Appeal?

In the UK, approximately 1 in every 7 people are affected by some form of long term respiratory illness, and over 1 in 4 will die.  Almost 9,500 people die each year in London alone due to poor air quality.  Pulmonary fibrosis (PF) is a disease with a poorer prognosis than almost all cancers and for which there is no cure apart from transplantation. It is a disease where the respiratory system is irreversibly scarred, and breathing becomes harder and harder.  Mean life expectancy is 3 to 5 years post-diagnosis.

Christmas is an exciting time for most families, but it is impossible to enjoy when a family member is struggling for breath and can’t join in the fun.  This year, we have an exciting project that we would really love you to help us fund, and what better Christmas present could it be to simply help someone to breathe.

blood-clotThe money raised will fund our anticoagulation project for pulmonary fibrosis.  Patients with PF are known to suffer more from blood clots in the legs and in the lungs which can prove fatal.  We will investigate in a small group of patients whether simple treatment with blood thinners is safe in patients with pulmonary fibrosis and improves their lung function. This project has been fully approved by our local and regional ethical committee and takes use of our unique imaging programme using novel imaging in patients with PF to pick up an early response to therapy. This study has stimulated a lot of international interest and the results are eagerly awaited.

To remain independent of any drug companies, we plan to fund this project independently. We have already secured funding for the research team and our costs will be purely drug and imaging related.

For further information or if you wish to donate to our Christmas Appeal, here are ways you can help:

Ways of Donating:

  • Via our Justgiving Page: https://www.justgiving.com/breathingmatters
  • Or you can set up your own fundraising page from our lead Justgiving page.
  • Donate via text: Simply text “BMPF22 £XXX” to 70070
  • Email us on breathingmatters@ucl.ac.uk if you want to set up a bank transfer.
  • Ask your company to get involved and donate their ‘Secret Santa’ for this great cause.
  • Send a cheque made out to ‘Breathing Matters’ to us at the above address.
  • Spread the Word!

Thank you for helping someone breathe this Christmas!

xmas-images

A Christmas Carol – Jane’s Story

jane-walkerJane Walker was forced to give up choir singing upon developing Bronchiectasis. How does she revive her passion? She shares it.

Bronchiectasis is an abnormal increase in the size of the bronchi, which are the tubes that take air into the lung. With the increase in size, bacteria often get caught in these tubes, which often result in chronically infected bronchi.

Jane Walker is the woman behind the Breathing Matters Christmas carol concert, and from 2006, Jane had to give up her passion of singing due to suffering from repeated chest infections. Upon referral to UCLH, in 2011 Jane was diagnosed with Bronchiectasis.

Before developing Bronchiectasis, Jane’s life had been centred around music; she was extraordinarily talented, and she loved to sing. “Singing has been part of my life from a very young age”, Jane says. “I started lessons when I was 13, then I went on to play the flute, I got my grade eight in both! I studied Music, and achieved my degree and post grad PGCE to teach.”

With all of this musical talent to offer, success soon followed Jane, and she later went on to sing with a professional choir, the Holst Singers. Jane explains that one of her most memorable moments was taking part in the premiere of John Tavener’s, The Veil of The Temple; an eight hour all-night performance in the Temple Church, and the longest piece of music composed in Western European classical music. “I also sang at the BBC Proms in the Royal Albert Hall, recorded CD’s with the Decca label and took part in various concerts that were broadcast live on Radio 3”, Jane says.

However, when Bronchiectasis struck, Jane suffered prolonged chest infections, which were exhausting and debilitating; and forced her to discontinue with her singing. “Some days I would wake up with phlegm producing cough that would go on for up to an hour”, Jane explains.

Jane battled with her Bronchiectasis, and in September 2013 she attended the Breathing Matters Breathtember Celebration in the Refectory at UCL. At the event Jane found presentations informative; she learnt more about research into lung diseases, and realised that such research is underfunded, and not given the publicity it deserves, often due to the misinformed perception that lung diseases are something related only to smoking.

“But I have never smoked and have a lung condition”, says Jane. “I thought a lot about the presentations and decided that I want to do something to fund research”, she adds.

Jane got in touch with the team at Breathing Matters, a charity set up to raise awareness and work with patients to help find a cure and develop better treatments for Interstitial Lung Diseases, and mentioned that she used to sing with a professional choir. Jane suggested that she could contact the choir, to see if they’d be interested in performing in a fundraising concert for Breathing Matters at Christmas.

“I missed singing with the Holst Singers and I knew this would be a great way to maintain my connection with them”, Jane says. “The team at Breathing Matters instantly became excited by the potential of the event, and even more so when the Holst Singers said yes!”

Jane explains how Breathing Matters is a fantastic charity that is very aptly named: “Breathing Matters an awful lot when you are singing or playing an instrument –I am now so happy that even though I cannot sing myself anymore, I can encourage others to share my passion – especially now that the concert is an annual occurrence!”

“I hope that the work we do to raise awareness and raise funds for research into Bronchiectasis will help to give this lung condition the recognition it deserves”, Jane concludes.

The Breathing Matters charity concert will this year again take place in the beautiful setting of St Paul’s church in the centre of Covent Garden on the 9th December at 7.30pm. The evening will begin with a presentation followed by a programme of Christmas music sung by the choir. To buy a ticket at £25, follow the link below:

http://www.bmchristmas.bpt.me

 

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.

Bronchiectasis Supporters Evening

There was a lively Q+A session after Professor Jeremy Brown’s presentation at our Breathing Matters jb-talking-1Bronchiectasis Supporters Evening last week.

“How do we know when to start antibiotics?”

“What information will the newly opened Bronch UK study show?”

“What can we do to help?”

Professor Stephen Spiro from the British Lung Foundation explained how the BLF have a big voice and can lobby to make the case of bronchiectasis heard nationally on behalf of smaller charities, such as Breathing Matters.

The evening started off with a very personal story of bronchiectasis from Jane Walker, who is a patient at UCLH and part of our Breathing Matters team.  Jane used to be in the Holst Singers choir before bronchiectasis stopped her from singing professionally.  Jane now organises our annual Christmas Concert, with the Holst Singers in residence.

Guests were then treated to a tour of the refurbished laboratories.

It was so lovely to meet so many of you in person and we look forward to seeing you at our Christmas Concert at St Paul’s Church in Covent Garden on 9th December 2016, to help raise money for bronchiectasis research.

Thank you to Sainsbury’s Warren Street for supporting our evening.

Get Out Of Breath For #Breathtember

September is #Breathtember – Global Pulmonary Fibrosis Awareness Month

 Get out of Breath for #Breathtember

Tweet Tweet!

http://www.breathingmatters.co.uk/wp-content/uploads/2013/06/twitter.png

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 

twitter

 

 

Announcement: Christmas Concert Date

St Pauls logos

 

A Christmas Celebration

With The Holst Singers

An Evening of Carols
for Choir and Audience

St Paul’s Church, Covent Garden WC2E 9ED

Friday 9th December 2016 at 7.30pm

The proceeds from the concert will go towards

Breathing Matters UCLH Charity

which funds research at UCL into Bronchiectasis

The Holst Singers is one of Britain’s foremost choirs

and has been described by the BBC as

“a leading chorus on the international stage”

Tickets are £25.  BUY TICKETS HERE
For further details and paper tickets:
please contact Jane Walker
Tel: 01732 366346
Email: missjanewalker@hotmail.com

Holst Singers Logo

 

Not Hay Fever Again

hay feverOh no … itchy eyes, runny noses, sneezing … it’s Hay Fever season again!!! Read this article to help prepare you for what’s to come.

What is Hay Fever?

Hay fever (seasonal allergic rhinitis) is an allergy to pollen. The pollen season separates into three main sections:

  1. Tree pollen – late March to mid-May.
  2. Grass pollen – mid-May to July.
  3. Weed pollen – end of June to September

To get the latest pollen forecast, view the Met Office weather map which provides a UK forecast of the pollen count and provides any hay fever sufferers with an early warning.

Who Gets Hay Fever?

Hay fever is very common. It affects about 2 in 10 people in the UK. It often first develops in school-age children and during the teenage years, but may start even later in life. Hay fever tends to run in families. You are also more likely to develop hay fever if you already have asthma or eczema. A tendency to these atopic illnesses can run in families.

Hay Fever Symptoms

  • Common symptoms include sneezing, runny or blocked nose, itchy eyes, mouth and throat. Less common are headaches and hives.
  • Asthma symptoms – such as wheeze and breathlessness, may get worse if you already have asthma. Some people have asthma symptoms only during the hay fever season.
  • The symptoms may be so bad in some people that they can affect sleep, interfere with school and examinations, or interfere with work.

Hay Fever PreventionHay Fever Fact

Although it is very difficult to avoid exposure to pollen, there are a number of measures you can take that will help you to minimise exposure and ease the severity of your hay fever symptoms. Following these steps may help provide some relief from your symptoms:

  • Keep windows closed when at home and overnight. Most pollen is released in the early morning and falls to ground level in the evenings when the air cools.
  • When outdoors, wear wrap-around sunglasses to keep pollen out of your eyes. For any outdoor tasks, such as gardening, hay fever sufferers should wear a mask.
  • Some people find smearing your nostrils with vaseline to capture the pollen helps.
  • Avoid drying clothes outside when pollen counts are high. If you do, shake items before bringing them inside.
  • Keep car windows closed when driving and fit a pollen filter to reduce the impact of pollen spores. Ensure your air conditioning is set to recirculate the air inside.
  • When indoors: vacuum regularly and clean surfaces with a damp cloth. The British Allergy Foundation have a list of ‘approved’ anti-allergen vacuums that help to filter out pollen on their website, allergyuk.org.
  • Avoid bringing fresh flowers indoors.
  • Don’t allow smoking in the house as this will irritate the lining of your nose, eyes, throat and airways, making your hay fever symptoms worse.
  • After being outside, shower and wash your hair to remove pollen.
  • Grooming and washing pets more frequently at this time of year, to remove trapped pollen from their coats, can be helpful too. Pollen levels tend to be higher on warm, dry days.
  • The Metereological office offers a useful five day pollen forecast (metoffice.gov.uk), so you can prepare for high pollen count days.

Hay fever sufferers can benefit from a wide range of non-drowsy medication which can be prescribed by your GP, or alternatively purchased over the counter from your local pharmacy.  Starting this medication two weeks before the season can prepare your body.

Your GP or hospital consultant can help you find the most appropriate treatment for you especially if you also have asthma and other allergies. Treatments include antihistamine tablets or nasal sprays, corticosteroid nasal sprays and drops, nasal decongestants, eye drops, immunotherapy, and alternative therapies.

Treatment for Severe Symptoms

Rarely, a short course of steroid tablets is prescribed for a week or so. For example, for students sitting examinations,   A short course is usually safe.   However, you should not take steroid tablets for long periods to treat hay fever, as serious side-effects may develop.

Dr Harsha Kariyawasam, Consultant Allergist at the Royal ENT Hospital says, “‘The most important step that an individual with allergic rhinitis should do is to have an accurate diagnosis. The exact allergen provoking symptoms should be identified. Where possible, allergen avoidance measures should be instigated. Treatment with medication, introduced in a step wise manner should also be undertaken. We are getting very good treating allergic rhinitis and there are several effective new treatments available. Allergy desentisation by a trained allergist is possible and there are several exciting vaccines either in practice or in development. Everyone deserves to enjoy spring and summer!”.