What are the common symptoms?
The symptoms often begin around the age of 30 or at times of hormonal changes (e.g. pregnancy, menopause).
The disease is often misdiagnosed as asthma or psychosomatic.
Stridor - this is what we often describe as a wheeze, the sound when we breathe in and out. It will often be silent most of the time but get worse under exertion or in stressful situations. When your stenosis is particularly narrow, you may hear your stridor all the time. Officially, a stridor is described as ‘noisy breathing due to narrowing (stenosis) of the airway at or below the larynx’. Often, we as sufferers stop noticing this sound ourselves, and it is friends, relatives and work colleagues who might mention it to us. We often describe this as Darth Vader breathing!
Coughing – early on in your condition the coughing might not be too bad, but it tends to get worse over time. This is because the little hairs (cilia) which usually line your respiratory tract are absent where the scarring is. These hairs usually help move mucus smoothly up and down your airway. Where they are missing, you will need to cough the mucus past. The coughing will often get worse when you are talking lots, exercising or in stressful situations.
Breathlessness – it will be a struggle to breathe, talk, laugh, and don’t even think about singing! The more constricted your airway, the more challenging it will be. This is often what causes doctors to misdiagnose us with asthma.
Voice - Sometimes the voice is also affected, as the constriction is usually directly under the vocal cords and these can be affected. The voice then becomes quieter or sounds hoarse.
Is it really asthma?
Unfortunately, rare diseases are still often not recognized for a long time, which is why those affected often have to endure a long period of suffering before they receive help.
We are affected by the very rare idiopathic progressive subglottic tracheal stenosis. We have formed a self-help group and unfortunately learned from our discussions that most of us had to suffer from increasing shortness of breath and its consequences for months and years before our illness could be recognized and treated. For this reason, it is important to us to make this illness and its treatment methods better known to everyone so that those affected can receive the correct diagnosis and help more quickly in the future.
Mucus – we generally do not have any more mucus than the average person; rather it becomes harder to shift because of the scar tissue and the narrowing (see diagram). If you have inflammation in your airway, it is likely there is more mucus as the two (inflammation and mucus) come hand in hand. You may also find that you’re more prone to getting minor bacterial infections within the mucus as it sits behind the scarring and thickens up. You’ll have to cough hard to shift this and it might come up as a ‘plug’ – often thick white, yellow, or green. If you are concerned, see a doctor, but mostly this clears up. Please see our tips for thinning and minimizing mucus and the section on ‘mucus plugs’.
Inflammation – all this coughing and shifting of mucus can lead to inflammation. If it gets bad (it can lead to a vicious circle of coughing and more inflammation) you may end up taking a short course of steroids. If you find you are prone to inflammation (your doctor may mention this after a scope), investigate our anti-inflammation tips which may help you avoid medication. Steroids have their own side effects, such as increased appetite (leading to weight gain), moon face (your face looks puffy and round), and with long term use, decreased calcium leading to brittle bones. Not everyone experiences these side effects but be aware. Chronic inflammation can be a sign of autoimmune disease – ensure you are tested annually for the suite of blood-tests detailed later in this document.
Fatigue – as it becomes more challenging to breathe, you are likely to feel more tired. You will feel that your ‘get up and go’ has ‘got up and gone’! Everything you do is likely to feel more of a challenge and you may find yourself feeling tired during the day. This should ease after a dilation – in fact, many patients report temporary feelings of euphoria once they can breathe well.
Inability to concentrate – alongside fatigue, the more you are concentrating on breathing, the less space you will find in your head to concentrate on other things in life – essentially you are in survival mode. After your airway has been opened back up, you should find space in your head for things other than breathing!
If you're like most of us, you've spent months or years misdiagnosed with asthma, bronchitis, or panic attacks. You're probably your GP's first patient with this condition. This means that our job is to raise awareness of the diagnosis of idiopathic tracheal stenosis and to help GPs refer patients with symptoms to an ENT specialist for further diagnosis.
In the members area, we exchange ideas about ways and means to make everyday life easier. Many symptoms can be alleviated and we can learn to deal with them better.
Note from tracheal stenosis self-help organisation This page has been linguistically revised by tracheal stenosis self-help organisation and its content adapted to the needs of the tracheal stenosis self-help organisation. The original text can be viewed in the English PDF in the download area.