Carers Week 2019

The 10th-16th June is national carers week in the UK, and this year’s theme is “help build carer friendly communities”. Though most people wouldn’t identify themselves as a carer (instead just calling themselves a partner/parent/child/friend etc.), there are millions of people around the UK providing unpaid care and support to a family member or friend. Caring for someone can be hugely rewarding, but can also impact on many aspects of life – carers need the help and support available to be able to look after their own wellbeing too.

Isolation and loneliness are major problems faced by carers; time and financial pressures can prevent them from reaching out to friends and family and participating in activities for their own interest. Also, despite contributing massively to society, carers are far less likely than the rest of the population to consider what they do as worthwhile. So… clearly as a society we need to change this and do more to help care for our carers!

The theme “help build carer friendly communities” aims to help link carers with the information and support they need so that they can care for others, and look after themselves. Raising awareness of carers in the media, in work and in communities helps link carers to the available support, whilst making the rest of us aware of the amazing jobs they do!

For information on support and resources available for carers, click here.

Click here to read a touching carers week blog by Jill, an aspergillosis patient.

How do I… cope with hair loss?

Certain medications prescribed for aspergillosis may cause some hair loss. Losing your hair can be very difficult, and can affect your self-esteem; unfortunately there is a social stigma attached to hair loss and this can affect many people’s confidence, but there are ways to cope.

Join a support group:

Joining a support group is a great way to meet other people going through the same experiences as you, and to share tips and coping skills with one another.

  • Local support groups: Alopecia UK has several local support groups based around the UK. Click here to find your closest meeting.
  • Online support groups: If you are unable to attend a local meeting, or you’d just prefer to find support online there are Facebook support groups for the UK and worldwide community: Alopecia UK Facebook group and World Alopecia Community. Here you can ask questions and share your experiences with others who suffer from hair loss. You can also use the aspergillosis support groups on Facebook to talk to others also coping with aspergillosis and associated problems: Aspergillosis Support (Private) and Aspergillosis Support

Talk about it:

Hair loss can hugely affect your confidence and self-esteem. Talking about it with your family and friends can help them understand what support you need from them, and help you to understand that they don’t see you any differently.

If you are really struggling, you might want to seek help from your doctor. The lack of control over this sudden change in your appearance (as well as coping with a chronic illness) can make people very vulnerable to mental illnesses. It is important to try and recognise this and tackle it as early as possible – for more information on recognising and avoiding depression, click here.

Cover up:

There are several different ways to cover up hair loss, from small bald patches to more severe cases. More detailed information on the tips listed below can be found here.

  • Haircuts and hairstyles: smaller bald patches can often be hidden with the right hairstyle. An experienced hairdresser will be able to help you choose the best haircut to cover up patches. If you’re worried about going into a salon, find a hairdresser who does home-visits. There are also many videos on YouTube that show you tips and tricks to style your hair over patches
  • Wigs: With more severe hair loss, you might want to try a wig. There are many different types out there, so Alopecia UK has put together a detailed guide to choosing a wig.
  • Head coverings: Headscarves, hats, head tattoos and camouflage products are all good and fairly cheap ways to cover up hair loss. These can be very individual and allow you to be flexible with your appearance.
  • Make up: Losing eyebrow and eyelash hair can change your appearance more than you think, which can be upsetting. Make up tips, such as wearing fake eyelashes or drawing eyebrows on with a pencil can help disguise facial hair loss. There are also more permanent options, such as eyebrow tattoos, that can help you achieve a more natural look.

However you choose to deal with hair loss, there is plenty of support, tips and advice out there for you to access!

Breathe journal June 2019 – ‘Living well with a Chronic Respiratory Disease’

The current issue of the European Respiratory Society’s journal, Breathe, focuses on living well with a chronic respiratory disease, and includes an article from an ABPA patient. Links to this patient voice article, and other pieces which may be of interest to aspergillosis patients are highlighted below.

Introduction: Living well with a chronic respiratory disease

Chief Editor, Claudia Dobler, introduces this issue in a short editorial. This covers a number of the burdens that lung disease patients can face, and the various ways in which they can achieve well-being and adjust to their circumstances in the face of chronic illness.

Living with allergic bronchopulmonary aspergillosis

Mike Chapman shares his experiences of living with ABPA and other respiratory problems. Many aspergillosis patients will identify with his experience of a lengthy and difficult journey to diagnosis, and trying to remain positive, despite debilitating health conditions.

Music and dance in chronic lung disease

This article covers the growing interest in using music and dance as part of a holistic approach to managing chronic lung disease. Several recent studies have focused on the benefits that music and dance have on the physical, mental and social health of those with chronic lung disease; this piece goes over some of this research, and the key gaps that are missing.

The role of cognitive behavioural therapy in living well with COPD

Anxiety and depression are common in people with chronic obstructive pulmonary disease and, as well as being major problems themselves, can interact with and worsen physical symptoms. This article again focuses on the holistic treatment of the patient, and suggests how we can incorporate CBT into routine care for those with COPD.

Where are the gaps in education in the field of rare lung disease? Perspectives from the ERN-LUNG educational programme survey

ERN-LUNG (the respiratory-focused European reference network) recently sent a survey out to healthcare professionals and patients to find out the gaps in rare lung disease education in Europe. From a patient’s perspective, a large majority thought that there was a need for patient education at a European level, but only just over a 3rd were aware of existing resources. 95% thought that patients had a role to play in the education of professionals. Read the article to see the key conclusions from the survey.

Click here to read the full journal

US based patients, carers and doctors – help us at the NAC!

In order to make our research as strong as possible we want to involve any doctor in the US who is involved with the diagnosis and treatment of aspergillosis. Patients and carers can help us by passing on our details in an email to all of your doctors, including a link to a survey asking for their contact details. The more we get the better!

Please copy & paste the following to your clinical team – more than one if you have them, specialist or general doctor.

Dear [Your doctors name]

The National Aspergillosis Centre (NAC) in Manchester UK is one of the foremost research centres in the world studying all forms of chronic aspergillosis (eg CPA, ABPA, SAFS, Aspergillus bronchitis, aspergilloma) and was the first centre recognised by the European Confederation of Medical Mycology (ECMM) and a Centre of Excellence.

Run by Director Professor David Denning, we would like to be able to contact clinicians in the US who are involved in diagnosing and treating aspergillosis, so that we can help involve you in our research programs. Only by working together can we improve diagnostics and antifungal medication for this chronic infection.

If you are interested in joining with us please complete this simple 5 question survey https://www.surveymonkey.com/r/7G533HH

Many Thanks
Dr Graham Atherton

National Aspergillosis Centre
Manchester University NHS Foundation Trust – Wythenshawe Hospital, Manchester, UK

Yoga for lung condition patients

The Irish Lung Fibrosis Association has produced an hour-long video, which takes viewers through yoga exercises suitable for patients with lung fibrosis and other respiratory conditions. Exercise is key to a healthy lifestyle, and can improve quality of life in those who suffer from lung conditions. If you struggle to stand, the first half of the video is devoted to exercises that can be done sitting in a chair.

Further information about exercising with aspergillosis:

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