Lung Health

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Taking care of pulmonary health is essential for those living with FOP. It is important that your healthcare team includes a pulmonologist or respiratory specialist, to monitor your pulmonary health so any concerns can be addressed quickly.

Regular check-ups and lung function tests with a specialist, in consultation with your FOP specialist and GP, can help to manage any health issues so that appropriate interventions are implemented swiftly to reduce the need for more complex interventions.
You should request that your FOP specialist or primary care doctor to refers you to a lung specialist.

The progression of FOP puts those living with the condition at a higher risk of complications from flu, pneumonia and Covid-19. However, with proper lung care and advice, those living with FOP can help to improve their health outcomes. There are a number of steps those living with FOP can take to improve their lung capacity and strength. The webinar below, led by Dr Angela Cheung, a Canadian FOP expert, is a great place to start learning how one can play an active role in improving their own lung health.

FOP can cause the formation of bone in the chest muscles and ribcage, leading to restricted movement of the chest wall and reduced lung expansion. This can result in impaired respiratory function and decreased lung capacity. Maintaining optimal pulmonary health is essential to ensure adequate oxygenation and ventilation. These restrictions can also make individuals with FOP more susceptible to respiratory infections such as pneumonia.

A reduced lung capacity can affect breathing so FOP specialists recommended doing 15 – 30 minutes a day of active respiratory activity. This helps to keep the diaphragm and other respiratory muscles strong and healthy.

Activities should be fun and not cause pain. FOP specialists love to recommend singing in the shower! Other ideas include playing an instrument, swimming, a spirometer, or blowing bubbles. Such exercises can improve respiratory muscle strength and enhance overall breathing efficiency.

Having happy and healthy lungs plays a significant role in a person’s overall well-being and quality of life. By maintaining good lung health, people can take part in daily tasks with greater ease and can reduce fatigue and tiredness.

An Introduction to Lung Health by Dr Angela Cheung

Dr Cheung is an FOP Expert, based in Canada.  In this webinar for the IFOPA, Dr Cheung explains the importance of looking after your lung health for those with FOP.

She also gives advice on ways to improve lung strength and capacity.

Watch it here: An Introduction to Lung Health

Covid-19 and FOP

Although the world has gone back to ‘normal’ after the pandemic, it is still a very real concern for those with underlying health conditions such as FOP.

We will continue to keep our community updated about the implications of Covid for those with FOP.

For more information on Covid visit:


Taken from:

Spirometry is a simple test used to help diagnose and monitor certain lung conditions by measuring how much air you can breathe out in one forced breath.  It’s carried out using a device called a spirometer, which is a small machine attached by a cable to a mouthpiece.  Spirometry may be performed by a nurse or doctor at your GP surgery, or it may be carried out during a short visit to a hospital or clinic.

Vist the NHS website for further information.

Ability Toolbox: respiratory resources

Some of the resources mentioned in the IFOPA’s webinar can be found in the Ability Toolbox.  Other resources can be found through a google search.

Before using any medical device, please consult with a respiratory specialist.


Hydrotherapy, or aquatic therapy as it is also known, involves special exercises which are done in a shallow, warm-water pool, under the guidance of a physiotherapist. It offers a range of potential benefits including benefits to respiratory health.  Hydrotherapy os offered on the NHS and most hospitals have access to a hydrotherapy pool.  Speak to your occupational therapist, physiotherapist or GP to find out more about accessing hydrotherapy in your area.

Read more: Hydrotherapy

Asthma and Lung UK

Asthma and Lung UK is the UK’s lung health charity, supporting people with a range of lung health challenges.  They offer information and advice, as well as a range of support services including telephone and WhatsApp helplines.

Visit their website for more information:

International Clinical Council for FOP

Ensure all medical professionals involved in your respiratory care have read the International Clinical Council’s Medical Guidelines.

Respiratory issues are covered throughout the guidelines, but the main section can be found from Page 55 (March 2022).


Pneumonia is a particular concern for those living with FOP.

For further information on pneumonia, with advice from the NHS, ICC for FOP, and the ‘What is FOP?’ Guidebook for families visit:

Breathing Exercises

Good pulmonary health starts from a young age.  There are lots of fun breathing exercises, techniques, games and ideas which are freely available with a quick google search or browse around Pinterest.

Ideas to improve lung health include: singing, blowing bubbles or balloons, playing a musical instrument, swimming and hydrotherapy.

A spirometer or peak flow whistle can also be used.  See the ICC Guidelines for more information.

FOP and Flu

Flu can cause many complications for those living with FOP. The ICC specialist doctors update their guidance every year on the best practice for those living with FOP.

Read more here: FOP and Flu