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World Pneumonia Day – 12th November

Pneumonia is a major cause of death among all age groups, resulting in 1.4 million deaths in 2010 (7% of the world’s yearly total) and was the 4th leading cause of death in the world in 2016, resulting in 3 million deaths worldwide.

Pneumonia is an infection of the deep parts of the lungs called the alveoli. This is where oxygen is transferred into the blood from the air, but during pneumonia the alveoli are invaded by bacteria or viruses which then causes the alveoli to fill up with fluid and white cells in an attempt by the body to kill the bugs. Alveoli filled with fluid and cells is called consolidation and shows up on an X-ray, and is also why patients with pneumonia become breathless as there is less lung available to transfer oxygen into the blood. If the pneumonia spreads to affect the edge of the lung, then it can inflame the membrane that covers the lung called the pleura. This causes a lot of pain, especially on breathing in, and is called pleurisy.

Recent research by Professor Brown’s infection research team at UCL Respiratory has had three research papers published which describe new findings about the commonest causes of pneumonia.

Streptococcus pneumoniae interacts with humans to cause infection. They describe the mechanisms by which the human immune system recognises the presence of S. pneumoniae and then responds to cause inflammation that is necessary for controlling infection. They are basic science research which do not directly feed into clinical care, but help us better understand how diseases like pneumonia develop and could therefore be prevented.

  1. Weight CM, et al. Epithelial control of colonisation by Streptococcus pneumoniae at the human mucosal surface Nat Comms 2019 10(1):3060.
  2. Javan RR et al. Prophages and satellite prophages are widespread among Streptococcus species and may play a role in pneumococcal pathogenesis Nat Communications, in press 2019.
  3. Periselneris J et al. Relative contribution of extracellular and internalised bacteria to early macrophage pro-inflammatory responses to Streptococcus pneumoniae. mBio, in press 2019.

If you would like to support this work, please donate to: https://www.justgiving.com/campaign/breathingmatters

 

Coronation Street Pulmonary Fibrosis Storyline, November 2019

We are so happy to see a storyline on pulmonary fibrosis in Coronation Street in November 2019 (the storyline starts 11th November).  Breathing Matters’ Medical Director, Professor Joanna Porter, was honoured to be asked to be medical advisor on this script so it should be authentic!

This is such a fantastic platform to showcase this devastating disease which is on the increase in the UK, and to raise much needed awareness and hopefully more investment in research for a cure and better treatments.

You can see a preview of the storyline here: https://www.itv.com/coronationstreet

Happy watching!

 

Newsletter – Autumn 2019

Autumn 2019 Newsletter – Quiz Answers

 

Q: Which year did England last win the World Cup?

A: 2002 – sadly not 2019!

 

Q: What is the name of the World Cup trophy?

A: Webb Ellis Cup

 

Q: In what year was the first Rugby World Cup?

A: 1987

 

Q: Who won the first Rugby World Cup, and who were runners-up?

A: New Zealand were the champions.  They defeated France 29-9

 

Q: Who has scored the most tries in a Rugby World Cup?

A: Bryan Habana and Jonah Lomu share the record for the most tries (15) in Rugby World Cups, and share the record for most tries in a single World Cup tournament (8) with Julian Savea 

 

Lung Infection Research Update

Prof Brown’s team has had two papers on bronchiectasis published recently.

The first describes the rapid development of bronchiectasis in patients who have weakened immune systems due to haematological disease.  This includes information for around 80 patients about bronchiectasis caused by haematological disorders such as lymphoma, myeloma  or leukaemia. This is the largest number of these patients described in the medical literature, and is important as it makes other doctors aware that bronchiectasis develops very quickly in these patients and causes a lot of ill health; better awareness of the problem will make doctors much better at recognising these patients and referring them to specialist centres, such as UCLH.

The other paper on bronchiectasis uses computers and CT scans to measure the exact degree of the dilatation of the bronchi in patients with bronchiectasis.  The more dilated the bronchi the worse the bronchiectasis, but at present we can only really measure this by eye just looking at the CT scans, which is not very accurate. Using computer software to give an actual measurement for the severity of bronchial dilatation would be a significant breakthrough as it would allow us to follow what happens to a particular patient over time, and rapidly identify if things are getting worse.

Three research papers have also been published which describe new findings about how the commonest cause of pneumonia.

Streptococcus pneumoniae interacts with humans to cause infection.   They describe the mechanisms by which the human immune system recognises the presence of S. pneumoniae and then responds to cause inflammation that is necessary for controlling infection. They are basic science research which do not directly feed into clinical care, but help us better understand how diseases like pneumonia develop and could therefore be prevented.

  1. Jose R et al. De novo bronchiectasis in haematological malignancies. ERJ Open, in press 2019.
  2. Kin et al.  Reproducibility of an airway tapering measurement in computed tomography with application to bronchiectasis.’  J Medical Imaging, in press 2019.
  3. Weight CM, et al. Epithelial control of colonisation by Streptococcus pneumoniae at the human mucosal surface Nat Comms 2019 10(1):3060.
  4. Javan RR et al. Prophages and satellite prophages are widespread among Streptococcus species and may play a role in pneumococcal pathogenesis Nat Communications, in press 2019.
  5. Periselneris J et al. Relative contribution of extracellular and internalised bacteria to early macrophage pro-inflammatory responses to Streptococcus pneumoniae. mBio, in press 2019.

 

Management and Treatment of IPF – Update

Idiopathic Pulmonary Fibrosis, or IPF, is a growing problem worldwide with increasing numbers of people being affected. There is no cure and treatment options are limited to expensive anti-fibrotic drugs that can slow down the progression of the disease, but not reverse it or stop it completely. These medications have multiple side effects, which can further impact on patients’ quality of life, and only patients with moderate lung function impairment have approved funding to receive them.

The management of patients with IPF is multifaceted and consists of patient education and support, regular outpatient surveillance, symptom relief, pulmonary rehabilitation, annual vaccinations to prevent respiratory infection, supplemental oxygen, managing of comorbidities and ultimately palliative care or, in a minority of patients, referral for lung transplantation.

Following the publication of the ASCEND (A Phase III Trial of Pirfenidone in Patients with Pulmonary Fibrosis) and IMPULSIS (Investigating the Safety and Efficacy of Nintedanib in IPF) trials, two new anti-fibrotic treatments became available for patients who meet stringent National Institute for Health and Care Excellence (NICE) criteria. Pirfenidone and Nintedanib neither cure nor reverse the fibrosis, and have little impact on symptoms, but have been shown to reduce rates of lung function decline and, in the case of Pirfenidone, improve progression-free survival.

Both Nintedanib and Pirfenidone, which are available for use in patients with moderate IPF as defined by an FVC of 50-80% predicted, are associated with side-effects that can affect a patient’s ability to tolerate treatment. Commonly reported side-effects of both are gastrointestinal including diarrhoea, nausea, abdominal pain, and vomiting as well as weight loss and liver enzyme derangement. Additionally, Pirfenidone is associated with skin photosensitivity. These side-effects can be managed with dose reduction, anti-motility agents, taking medication with meals and avoiding sun exposure, but undoubtedly further impact upon health related quality of life.

Update by Dr Emma Denneny

A Gift For Life – A Guide to Making A Will

Leaving Breathing Matters a gift in your Will can help us continue our pioneering research.

This is a guide to preparing, making or amending (adding a codicil to) your Will. It does not constitute legal advice and we advise that you seek professional advice to write or amend your Will. Legacy gifts to registered charities like Breathing Matters, UCLH Charity are exempt from tax, and a solicitor will be able to give advice as to tax planning.

For a Will to be valid, it must be in writing and:

  • Made by a person who is 18 years old or over.
  • Made voluntarily and without pressure from any other person.
  • Made by a person who is of sound mind. This means the person must be fully aware of the nature of the document being written.
  • Signed and dated by the person making the will in the presence of two witnesses, who are not beneficiaries of the will.

If you are making your Will while on the premises of any of the UCLH hospitals or UCL research centres, please note that no member of UCLH or UCL staff can witness your signature if this organisation is a beneficiary. Such an act could invalidate the Will because a witness cannot be a beneficiary.

If you wish to discuss any matters relating to leaving a Legacy to Breathing Matters, please email us at breathingmatters@ucl.ac.uk

 

STEPS TO MAKING A WILL

1: Appoint a solicitor – A list of solicitors who deal with wills and probate in your area can be found on the Law Society website: www.lawsociety.org.uk

2: Information to take to the solicitor – Taking the following information to your solicitor will save time and ensure that all the information is to hand when drafting your Will. Remember to split the value of any joint assets or liabilities.  See checklist below.

  • Your details: Full name, address and post code, telephone number.
  • Value of Your Estate: Up-to-date information as to the value of your estate would assist. Things to think about would be: house, antiques/paintings, household contents, vehicles, jewellery, savings and investments, insurance policies, pensions, endowments and any other assets you would like included.
  • Liabilities: This will include any debts, ie. mortgages, loans, credit card balances, credit agreements, overdrafts, tax bills and any other outstanding debts.
  • Executors – The names and contact details of, ideally, two executors (see below for more information on executors).

3: Your wishes and who you wish to benefit – A Will ensures your wishes are carried out and will save problems for your loved ones who are left behind. Those who benefit are your “beneficiaries”. They may include family, friends and any causes that you would like to leave a Legacy to. The solicitor will require their contact details and how your estate is to be divided.

4: Leaving a Legacy to Breathing Matters – If you wish to leave a gift to us, this is called a “Bequest”. It helps if a Bequest is not too exact as types of equipment or names of treatments may change over time. If a Bequest is too specific, it may mean that we will not be able to meet all the conditions in the future and the Legacy may not be used to help with new research projects.

There are three main types of Bequests that you can choose to leave Breathing Matters a share of your estate:

Pecuniary Bequest: This is a gift of a fixed sum of money, and we recommend the following wording: “I give the sum of £.… (amount in figures and words) to Breathing Matters, UCLH Charity (registered charity no.1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) to carry out research work and I direct that the receipt of a duly authorised officer of UCLH Charity shall be a valid and appropriate form of discharge.”.

Residuary Bequest: A gift made of the remainder/residual of your estate after all other beneficiaries are provided for and any debt, tax and administration costs have been met. We recommend the following wording: “I give all (or a % share) of the residue of my estate to Breathing Matters, UCLH Charity (registered charity no 1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) to carry out research work and I direct that the receipt of a duly authorised officer of UCLH Charity shall be a valid and appropriate form of discharge.”.

Specific Bequest: This is a particular item or asset left as a gift. An example would be a piece of jewellery, furniture or painting. We recommend the following wording: “I give to Breathing Matters, UCLH Charity (registered charity no 1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) to carry out research work and I direct that the receipt of a duly authorised officer of UCLH Charity shall be a valid and appropriate form of discharge.”.

It is also a good idea to include the following wording at the end of the Bequest: “If, at my death, any charity named as a beneficiary in this Will or any codicil hereto has changed its name or amalgamated with or transferred its assets to another body, then my executors shall give effect to any gift made to such charity as if it had been made to the body in its changed name or to the body which results from such amalgamation or to which such transfer has been made.”.

5: Who will carry out your Will? – In your Will, you appoint “executors”. They are appointed to carry out your instructions left in your Will. It is advisable to have two executors. The solicitor will need details of your executors – who can be family, friends and/or professionals. Executors can be beneficiaries to the Will. It is usual to have someone who would understand financial matters. It may help to add a side letter, setting out your instructions to the executors.

6: Signing of a Will – Until the Will has been signed, it is not valid. It must be witnessed and those witnesses can not be beneficiaries under the Will.

 

AMENDING AND UPDATING YOUR WILL

It is always a good idea to review your Will after any major life changes for example, getting married, having a child, divorced or moving house. A change to your will is called a “codicil”.

A Codicil to an Existing Will

A codicil is a minor amendment or change to your Will.   Sample wording as follows: “I [name] of [address] DECLARE THIS to be a codicil to my last Will

  1. In addition to the provisions of my said Will, I GIVE to Breathing Matters, UCLH Charity (registered charity no 1165398, 5th Floor East, 250 Euston Road, London NW1 2PG) for its research purposes

EITHER:

  1. a) the sum of £……, or
  2. b) [all or a specified %] of the residue of my estate
  3. IN WITNESS whereof, I have hereunto set my hand this [day] day of [date] SIGNED as a codicil in the presence of: (space for the names, addresses and signatures of witnesses”.

A solicitor can assist you with the final wording.

 

If you wish to discuss any matters relating to leaving a Legacy to Breathing Matters, please email us at breathingmatters@ucl.ac.uk

You can help us make a difference!

 

 

 

Holst Singers’ Charity Christmas Concert

Holst Singers Christmas Concert in aid of Bronchiectasis research at UCL

Friday 13th December 2019,  7.30pm, St Pancras Church

Tickets now on sale (£25 each) for a festive treat of traditional and contemporary seasonal music and readings.

The Holst Singers annual Christmas Concert to raise funds for bronchiectasis research at UCL will once again take place in the neo-classical setting of St Pancras Church (Euston Road NW1 2BA) on the edge of Bloomsbury, just a short distance from UCLH. As in previous years, Charlotte Green of BBC Radio 4 will delight us with readings and there will be audience carols as well as a feast of seasonal music performed by the Holst Singers.  Tickets will be available on the door, but to be sure of a place at what will be one of the most wonderful evenings of the year, booking tickets early is advisable.

For further information and tickets, please contact Jane Walker either by telephone 01732 366346 or by email missjanewalker@hotmail.com

Tickets are also available online by clicking this link https://bmchristmasconcert.bpt.me

Donation received from Profile Pharma, towards the costs of staging this concert

Sign up for a great September challenge; deadline for registration 9.8.19

Breathing Matters has places at some amazing fun and adventurous challenges coming  up – BUT YOU NEED TO REGISTER BY FRIDAY 9th AUGUST 2019!!!

Descente London Duathlon events, Richmond Park, Sunday, 8th September 2019

This is the world’s biggest duathlon on closed roads in beautiful Richmond Park in South West London.

Our places are cheaper than those advertised on their site:

Their price Our price Fundraising
Full £88 £80 +£250
Half £82 £80 +£250
Relay £139 £100 +£250
Ultra £144.50 £100 +£250

We simply ask that you raise a further £250 for Breathing Matters per participant.

More info on the event is at https://londonduathlon.com/

 

Finsbury Park Rough Runner – a Fun Obstacle Course for all Levels, Saturday 7th September 2019 and Sunday 8th September 2019

The Rough Runner is a unique obstacle course challenge; bounce on big balls and climb your way through the extraordinarily fun course before taking on the energy sapping travelator.

You can choose from the 5K or 10K course.

What others say:

  • “Loved every second of it! The course was fun and not all the obstacles were challenging so overall was a very fun experience!”– Chelsie
    “Had a very fun time for our first even like this, even though we don’t run a lot it was a lot of fun and wasn’t too competitive.” – Brandon

Places with Breathing Matters are £40 and we ask that you raise at least £60 per runner.

If you want to register for any of these challenges, email breathingmatters@ucl.ac.uk but don’t delay registration deadline is 9th August 2019.

 

Get Out of Breath for #Breathtember

 

September is #Breathtember – Global Pulmonary Fibrosis Awareness Month

 Get out of Breath for #Breathtember

Tweet Tweet!

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

To help raise awareness, we ask that supporters tweet different challenges during September including the term ‘#Breathtember and 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 wondrous London bridges
  • Blowing bubbles … or windmills!
  • Skydiving
  • Or just simply walking up the stairs!

The important thing is that you tweet your challenge including the hashtag ‘#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’.

Follow us on Twitter for further details: @Breathingmatter 

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