Rare Disease Day 2020 – 29th February

Rare Disease Day falls on the last day of February each year (with February 29th being a rare date itself!). The day is an opportunity for patients and advocacy groups to campaign and raise awareness about rare diseases, such as aspergillosis. 1 in 20 people will live with a rare disease at some point in their lifetime, yet there are still huge challenges faced by those who do. Common issues include delays to diagnosis and difficulties accessing treatment and care – these problems may sound all too familiar to many aspergillosis patients. Click here to find out more about Rare Disease Day, and how you can get involved!

What is Rare Disease Day?

Successes from Rare Disease Day 2019:



To share your story this year, click here to explore the ‘Rare Reality’ campaign website

Rare disease spotlight: interview with an aspergillosis patient and consultant

In collaboration with Medics 4 Rare Diseases, the Barts and the London Immunology and Infectious Diseases society recently held a talk about aspergillosis. Fran Pearson, a patient diagnosed with the condition, and Dr Darius Armstrong, a consultant in Infectious Diseases and Mycology, were both invited to speak at the event. Watch the full talk below to learn more about both the patient’s experience of diagnosis and the challenges faced by doctors when diagnosing patients with infectious diseases.

How can I protect myself from air pollution?

Air pollution is increasingly reported as being something we need to improve if we are to prevent damaging the health of millions of people. Anyone who experienced the ‘pea-souper’ fogs of the 1960s and earlier needs little introduction to the subject, but the Clean Air Acts in the UK in 1956, 1963 and 1993 sorted that out didn’t they? After all, we don’t see those dreadful weather conditions any more do we and now that we no longer burn coal very much those chimneys belching black smoke are a thing of the past?

In truth, conditions are very much better now compared with the 50s but we are a long way from eliminating the air pollution problem, The rise of the motor car and diesel goods transport is a major factor and the harmful, irritant gasses released are much less obvious so tend to be hidden. In the UK these pollutants are now closely monitored by the Environmental Agency and include nitrogen dioxide, sulfur dioxide, carbon monoxide, pm2.5 particulates.

Exposure to airway irritants is still very common outside the home – the popularity of wood-burning stoves in urban and suburban areas is a good example of a new trend that can make matters worse. Bonfires and fireworks are a problem at some times of the year and Global Warming may also lead to increased risk of uncontrolled burning such as happened on the moors surrounding Manchester in 2018 and happens in the US and are currently ongoing in large parts of Australia. Burning causes vast quantities of very fine dust particles and gasses to be released that someone with asthma can find very disabling and after the ongoing bushfires National Asthma Council Australia have published useful help about how to cope with asthma if you find yourself in a smoky area.

An excellent review of the harm air pollution can do to our health and a call to government to take action was released in 2018 by the Royal College of Physicians (Every breath we take: the lifelong impact of air pollution ) and it has been followed up two years later in 2020 when, rather discouragingly they note that some chances to change things have already been missed and progress has been minimal: https://www.rcplondon.ac.uk/news/reducing-air-pollution-uk-progress-report-2018

Is there anything we can do to reduce prevent us from inhaling these irritants?

The British Lung Foundation has an extensive article on this subject for outdoor air. They aren’t particularly supportive about the use of facemasks but some aspergillosis patients report that there is some benefit, especially when travelling or gardening.

Indoors as long as we keep doors and windows closed we can keep out a lot of the pollution in the outside air, but of course, it is not always possible to do so as we also need to vent out excess moisture from our homes at regular intervals eg when we shower, bathe, cook or do the laundry. Air filters for use in the home have long been available varying from the token small device to large floor standing devices but are they any good? The answer is that they can reliably clean some things out of the air provided that they are big enough to suit your room size. Good Housekeeping has written a useful guide.

There is a freely available world map of air pollution at https://waqi.info/

map of air pollution

Bedding, allergies and lung health

Image showing crumpled bedding

A recent case report in the British Medical Journal finds that a man has been treated for severe lung inflammation and breathlessness as a result of an allergy to his feather bedding. The source was found after potential triggers – such as his pets and a small amount of mould in his home – had been ruled unlikely, and it was discovered that his symptoms had begun soon after the purchase of new feather bedding. Blood tests revealed antibodies to bird feather dust and he was diagnosed with ‘feather duvet lung’, a severe immune response to the organic dust from the goose or duck down found within duvets and pillows. Left untreated the condition can cause irreversible scarring to the lungs.

Exposure to allergens can worsen the symptoms of people who suffer from allergies. In many cases, the more allergens there are in an environment, the worse it gets for the sufferer; for some people reducing the amount of allergen can help. The success of this approach depends on which allergen a person is allergic to (you can get tested by your doctor to check this), but if you find that your allergy is to indoor allergens such as dust mites or pet dander it can be worth trying to reduce your exposure to those allergens in your home. Likewise, if your allergy is to pollen or other allergens usually found outside the home, then you can attempt to filter incoming air. This may not work for you – take medical advice first before spending lots of money on ‘anti-allergy’ devices. However, if you find that there may be some point in trying to reduce your exposure to allergens in the home you will find a variety of products designed to do this on the Allergy UK website.

The Asthma charity Allergy UK provides a wide range of services to people suffering from allergies, including supervising a range of retail products that have been properly tested and assessed for efficiency at reducing our exposure to a range of allergens. For those sensitive to fungi we would point out in particular the pillow & mattress covers and HEPA filtered vacuum cleaners, but there are many more. For some homes (or places of work) there are underlying problems of damp – removing the sources of damp will also reduce the amount of fungi in your home and should improve your allergies.

The Allergy UK Seal of Approval

Our main endorsement is the ‘Seal of Approval’. When you see a product with this logo on it, you have the reassurance that the product has been scientifically tested to prove it is efficient at reducing/removing allergens from the environment, or that the product has significantly reduced allergen/chemical content.

The testing is carried out by an independent laboratory to protocols which have been created for the Seal of Approval by leading allergy specialists, specifically to benefit the sufferers of allergy, asthma, sensitivity and intolerance.

The importance of measles vaccination

A vaccination against the measles virus has been available since 1968 and is given to young children to protect them from this potentially deadly virus. This is a very good thing as measles can attack the central nervous system and cause severe damage – in unvaccinated countries it still accounts for hundreds of thousands of deaths and millions of infections.

The virus is highly infectious, spreading through the air and 9 out of 10 people who come into contact with the virus will get measles. It has been so effective that cases of measles in the UK, US and many other parts of the world are now rare. The graph below illustrates the startling effectiveness of the vaccine program in the US.

Measles cases in the US since 1954

Measles hasn’t gone away

Despite this success, the measles virus has not been eliminated worldwide. To be fully effective at stopping new infections arriving from overseas (where vaccinations are not the norm) and triggering a spread of cases, it is important that the majority of the people in a country are still vaccinated (herd immunity). In most countries, vaccination is not compulsory, so future success depends on parents opting their children into the vaccination.

Vaccination rate is falling

Unfortunately, vaccination rates have fallen over the last 10 – 20 years, partly triggered by erroneous suspicion that the vaccine might cause autism or other health problems in young children. This means that the number of cases per year is now rising in countries that had all but eliminated measles which is bad for those who are now vulnerable to infection but a recent research report suggests that the problems run deeper and can directly affect aspergillosis patients amongst many others.

Top ten countries for measles cases 2019
Top ten countries for measles cases 2019

Measles virus destroys antibodies

Researchers have discovered that the measles vaccine works in two ways. Firstly it provides protection against the measles virus – but it also protects the immune system of the immunised person against severe attack. Someone who has had measles (child or adult) can have severely reduced protection from other infections for years as the viral infection also results in a huge loss of antibodies that have been built up over the patient’s lifetime as a consequence of various infections. We need our antibodies so that our immune system can ‘remember’ earlier infections by bacteria, viruses and fungi – it enables us to respond quickly to a new infection. Failure to do so means that we have to experience the infection all over again, with all the risks to our health that that involves.

Aspergillosis patients

Aspergillosis patients, as well as people with other respiratory diseases, have a strong tendency to get more lung infections, These infections exacerbate their asthma symptoms and can make breathing so difficult a hospital admission is needed to provide oxygen and long courses of antibiotics are often important. The National Aspergillosis Centre in Manchester, UK has learned that vaccinating patients against these infections, where possible, is helpful as it controls exacerbations of the condition, reduced admissions and improves patients quality of life,

It may now be the case that aspergillosis patients will need to be checked to ensure that they are not at risk of getting measles, as succumbing to the virus could leave them even more vulnerable to secondary respiratory infections.

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