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

9th Advances Against Aspergillosis and Mucormycosis Conference

Between the 27th and 29th February 2020, scientists from around the world will be meeting in Switzerland to discuss the latest developments in aspergillosis and mucormycosis research. At these conferences, participants have the opportunity to view posters and attend talks on the latest research, as well as meeting other experts in the field. The National Aspergillosis Centre team was planning on attending the event, however due to concerns about Corona virus this has not been possible. Instead, Graham has chosen a few posters that he thinks may be interesting to patients and carers, and he has explained these on video. View these videos by clicking on the links below (you must already be, or become a member of the Facebook support group to do so):

Impact statements from people living with aspergillosis have also been displayed at the conference on World Aspergillosis Day, bringing patient voices to a largely academic event:

patient impact statement about aspergillosis

If you would like to know more about the conference, click here. If you would like to read the programme of abstracts yourself, you can find it here.

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.

https://www.facebook.com/BLIDSoc/videos/613592952798238/

‘Smart shirt’ used to monitor lung function

Hexoskin smart shirt
Hexoskin – the technology used to monitor breathing in this study

‘Smart shirts’, which are already used to measure lung and heart function in athletes, have recently been tested to determine their reliability in monitoring the lung function of healthy people performing everyday activities. The shirts were found to be reliable, giving researchers hope that they may be used in the future to remotely monitor the lung function of people with lung disease.

Smart shirts, called Hexoskin, use the stretching and contraction of the fabric to sense the volume of air inhaled or exhaled with each breath. They then send this data to an app, where it can be reviewed. The Hexoskin is comfortable and could be worn under clothing, providing an alternative to the bulky equipment traditionally used to measure breathing.

Though the technology is expensive and more work is needed, this study provides hope that the lung function of lung disease sufferers could be monitored remotely and simply by doctors. This would have the advantage that any deterioration of the condition could be recognised at an earlier stage and appropriate medical interventions could be initiated more rapidly. According to one researcher, ” Ultimately, we want to improve patients’ quality of life. If we can accurately monitor patients’ symptoms while they go about their normal activities, we might be able to spot problems and treat them sooner, and this in turn could mean less time in hospital.”

Source: ‘Smart shirt’ can accurately measure breathing and could be used to monitor lung disease

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.

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