Here are some characters you are going to meet in the guide…
Lucy Lungs is going to explain about PCD.
What is PCD?
PCD stands for
Primary Ciliary Dyskinesia
PCD can affect many parts of your body. It can make your lungs, nose and ears not feel good sometimes. This is because your cilia don’t work well.
Cilia line the tubes in everyone’s lungs, nose and ears. The tiny cilia help clear mucus, (which is a little bit like the sticky stuff inside your nose) from the tubes by beating all in time in the same way.
This moves the mucus from the tiny airways to the bigger airways then up to your throat.
In PCD the moving of cilia is not as strong. If the tiny cilia are not working well the mucus gets stuck.
It then builds up and needs to be moved with physio, exercise and nose blowing.
Meet Mr Mucus
Mr Mucus normally leaves the lungs via the cilia, a bit like if he was on an escalator moving out of the lungs.
But in PCD the cilia don’t work as well, so Mr Mucus becomes stuck in the lungs.
How to keep Mr Mucus from building up?
You can help Mr Mucus come out by doing physio everyday. There are lots of different ways to do your physio.
It is important to remove mucus, otherwise you could become unwell.
Your physiotherapist will help find what is best for you.
Sometimes Mr Mucus can become very sticky and he will find it hard to come out of your lungs.
Drinking water helps Mr Mucus to stay nice and runny so it is easier for him to come out.
So when you are doing physio or exercise try to do big coughs to help Mr Mucus come out. If you have a little pot with you, try and put him in there.
Have a look and see what colour he is! Mr Mucus can be different colours, (yellowy, browny, creamy). But if he is swallowed and ends up in your tummy we don’t know what colour he is.
Exercise is very important to help you grow up. It helps your muscles and bones to become stronger and also helps your lungs. You can do whatever exercise you enjoy that gets you out of breath.
Exercise can also help Mr Mucus to come out
There are lots of different types of exercise. Good exercise will make you breathe faster and feel a bit warmer. It should be good fun too!
Exercise may make you cough and bring Mr Mucus up.
This is really good but don’t forget to do your physio too.
Sporty is back again to mention how PCD can affect your…….
Nose!
If Mr Snot stays in your nose he might make your head hurt.
Remember to blow Mr Snot out and catch him in a tissue. This will make your nose feel nice and clear.
Always give your hands a good wash afterwards.
Esaan Ear has something he’d like to tell you about PCD:
Ears!
If you have PCD sometimes you can’t hear very well. This can be worse when you have a cold.
This is because the cilia help to clear fluid from your ears. If the cilia do not work there can be a build up of fluid and this makes it hard to hear.
The PCD team will ask you about your hearing, but make sure you tell someone if you can’t hear very well.
It is very important to have regular hearing checks.
Hayley the Heart would like to say something about PCD.
Some people with PCD have their hearts on the left, and some have their hearts on the right.
You don’t need to worry about this but you should tell your doctor this if they don’t already know and you are poorly.
You can ask your Doctor which side your heart is on.
When you come to clinic you will see the nurses. If you are big enough, around five years old, you can see how strong you are at blowing games on a machine.
Lucy, Sporty, Esaan, Hayley, Mr Mucus and Mr Snot want to remind you how important it is to come to clinic.
It’s also very important to see the physio too.
The physio wants to check that Mr Mucus and Mr Snot are coming out ok!
There are lots of people who work in the hospital who you may meet:
- Physios
- Doctors
- Nurses
- Play leaders
- Play specialists
- Dieticians
- Radiologists (who take x-rays of your chest),
- Audiologists (who check you can hear properly).
- Psychologist (who will help with Transition when old enough)
It is also a good time for you to ask questions about life with PCD.
If you are worried about treatments, missing school, having to do things others don’t, feeling different.
This is all normal when living with PCD.
Some of your Clinic appointments may also be virtual depending on how the Team feel you are doing.
The PCD nurse is there to help, just ask!
When you see the Doctor he or she will check your lungs, nose and ears and ask you some questions.
It is good to chat!
Lucy, Sporty, Esaan and Hayley want to say one last thing…
If you have any questions that you would like to ask the PCD team when you next come to clinic don’t forget to write them down and bring them with you.
That’s all from us, Bye bye!!!
Illustrations by Jessica Saxton (Lucy, Sporty, Esaan and Hayley)
Many thanks to all the children and families and members of the National PCD Teams for their contributions in the production of this leaflet.