World Sepsis Day 2021

What is Sepsis?

Our immune system usually works to fight any bacteria, viruses, or fungi, to prevent infection. If an infection does occur, our immune system tries to fight it, sometimes with the help of medication such as antibiotics.

Sepsis (sometimes called septicaemia or blood poisoning) is a life-threatening reaction to an infection. It happens when our immune systems overreact to infection, and it causes damage to the body’s tissues and organs.

 

Sepsis Facts

 

  • 1 in 5 deaths globally is associated with sepsis
  • It is a medical emergency
  • Between 47 and 50 million people a year are affected globally
  • It does not discriminate, while some people are at higher risk, anybody can get it
  • It is the most preventable cause of death worldwide

 

Sepsis Symptoms

These symptoms might indicate sepsis

  • Slurred speech or confusion
  • Extreme shivering or muscle pain/fever
  • Passing no urine all-day
  • Severe breathlessness
  • Mottled or discoloured skin
  • You feel so unwell, you think you might die

 

 

Shielding for Highly Vulnerable People Paused on April 1st 2021

The UK government has announced that the risk of infection due to COVID-19 has reduced to such a degree that the 4 million people who have been asked to shield due to a high potential risk of suffering severe symptoms from a COVID-19 infection have been told that they can stop shielding on April 1st 2021. Everyone affected will receive a letter  from the government in the next few days explaining this change.

NB most people with Chronic Pulmonary Aspergillosis will have been told to shield, people with ABPA are less likely to be told to shield.

Shielding is an extreme form of lockdown requiring people to e.g. stay indoors at all times, accept no visitors and limit direct physical contact with the outside world. This lack of direct physical social interaction is excellent at preventing infection from viruses like COVID-19 but the protection comes at a high price in terms of mental health. Anxiety, depression and loneliness are common and can be difficult to cope with, so the easing of these restrictions should start to help bring relief from those symptoms.

Of course, if you are experiencing any symptoms of anxiety and depression you should seek help from your doctor as these are potentially dangerous problems. The NHS provides several helpful resources too.

We have been listening to our patients here at the National Aspergillosis Centre in our regular weekly meetings on Zoom and in our Facebook Support groups and some talk of their anxiety over leaving shielding, especially if they are being asked to re-start work by their employer. This is perfectly normal of course – employers should be making your return to work as easy as possible – a staged return to work is is good way to do it to ease yourself back into the routine and allay your fears. The employer must make your workplace safe to work in.

Bear in mind that when we entered lockdown there were 65000 active cases a day and 2 million infected people in the UK, so one person in 34 was infected. As of today 18th March there were 5000 cases a day and a quarter as many active cases – 1 in 120 are infected.

Add to this that all highly vulnerable people will have had at least one vaccination giving them 90% protection and at least 40% of the people around them similarly protected, so the chances of infection are much reduced. The lifting of shielding is still 2 weeks away and the rate of reduction in people admitted to hospital due to COVID-19 is falling very fast, as is the number of deaths. The number of active cases will also likely be a lot lower at 1 in 250.

This is a pause in shielding, if our control over this virus slips a little the government will bring shielding back to protect the highly vulnerable.

Read full details of this change here.

Could you help us improve care for Chronic Pulmonary Aspergillosis (CPA) across Europe?

CPAnet logo

CPAnet has set out to improve patient care across Europe by becoming a central meeting point and resource centre for the study of  Chronic Pulmonary Aspergillosis (CPA), a seriously debilitating lung infection that remains:

  • difficult to diagnose (so there are probably many undiagnosed cases out there that are not getting the best treatment)
  • difficult to treat (antifungal drugs are not an easy to use, there is a limited supply of different antifungal drug classes)
  • difficult to have! Patients are managed over a long time but often experience multiple debilitating side effects as a result of taking antifungal medication, and multiple unpleasant symptoms caused by this long term infection.

CPAnet aims to accelerate better diagnosis and treatment by pooling resources, updating and upgrading standards and coordinating research so we all learn the maximum possible out of each study.

However, in order to achieve these ambitions, CPAnet needs your help. If you are a patient with CPA anywhere in Europe and you feel that you could tell us your story, describe your patient journey and tell us where the current system in your country could change for the better, then please get in touch. We can meet up online, you don’t need to travel and you will get lots of support to help you as you help us.
We are fully aware that people with CPA often feel too ill to participate, so you do not have to attend any particular meeting online, we will work around your limitations of time & energy.

To express interest in joining our fight against CPA, use the form below. You may withdraw at any time.

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Aspergillosis Monthly Patient & Carer Meeting

Aspergillosis meeting. Image of a silver computer with a virtual meeting taking place. There are a number of people on the computer screen, and a mug to the left of the image.

Aspergillosis patient and carers meeting, today (Friday, 5 February) at 1 pm.

We understand how difficult it is at the moment with the ongoing national lockdown and this is part of the National Aspergillosis Centre’s efforts to provide ongoing support for all patients (not just those of the National Aspergillosis Centre) and carers with aspergillosis.

This month we will be talking about:

  • Sars-cov-2 (Covid-19) vaccines and the recent developments
  • Immunodeficiency
  • Recapping on the global success of World Aspergillosis Day which took place on Monday 1 February
  • The importance of getting any new lumps, bumps or ongoing symptoms checked in support of World Cancer Day
  • There will also be time for general chat and questions.

The meeting is run by the National Aspergillosis Centre (NAC) staff. It is a great opportunity for any patients and their carers, family or friends to come along, ask questions and talk to other patients and NAC staff.

You can join the meeting for free on Zoom by clicking here, or using the meeting ID: 811 3773 5608.

The code to join is 784131. 

Or you can watch it live on Facebook.

If you want to know more about aspergillosis, the symptoms and who is at risk, click here:

World Aspergillosis Day, 1 February 2021

World Aspergillosis Day is almost upon us!

 

The aim of World Aspergillosis Day is to raise awareness of this fungal infection that like several other fungal infections worldwide is often under-diagnosed. Diagnosis of aspergillosis is difficult and requires specialist expertise (eg UK National Aspergillosis Centre, a European Confederation of Medical Mycology Cente of Excellence), but it also frequently occurs alongside much more common illnesses such as asthma, tuberculosis, COPD. Fungal nodules occasionally get mistaken for lung tumours.

 

World Aspergillosis Day, patient & carers symposium on Shortening the Patient Journey. 10am UTC on Zoom.

 

To mark WAD 2021 the National Aspergillosis Centre will hold a symposium for patients & carers. The theme is ‘Shortening the Patient Journey’ and we will hold a discussion on everyone’s journey to getting am aspergillosis diagnosis. We will try to identify how we can all help shorten the journey.

There will also be a chance to contribute to what the list of research aims as defined by patients and carers should be. We aim to get our researchers to add some of them to their projects.

The event will be held on Zoom and will be free to attend. If you would like to join us on the day, you can access the details via Facebook.

Or by emailing admin@aspergillosisday.org

There are a number of activities happening on the day, you can find out more here. 

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