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Cystic Fibrosis

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sarah bradley

on 28 September 2012

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Transcript of Cystic Fibrosis

Cystic Fibrosis Remember, you can stop at any time along
the way and ask an adult if you don't understand something we have talked about! Kids that have CF have lots of thick
sticky mucus that can block the pipes and make you cough lots Kids with CF Kids without CF This is what the pipes inside your lungs look like. Cystic Fibrosis What Is
Cystic Fibrosis? As you can see, our lungs are right in the middle of our chest.

Inside your lungs there are lots of pipes to move the air around.
The big pipes are called Bronchi.
The smaller ones are called Bronchioles.
There are also little air sacs at the end of the pipes called Alveoli. The air travels all the way here to give your body the oxygen it needs. Cystic Fibrosis, or CF, is a genetic disorder.
That means that you are born with it. Genes are like ingredients. You get some from your mum and some from your dad. Genes are instructions that tell each cell of your body what to do. The gene that gives you CF is broken. It sends the wrong instructions to the cells that make your sweat, tears and mucus. This swirly looking strand is called DNA. DNA is inside all of your cells and is where your genes are. The biggest problem with CF is that it causes your body to make lots of sticky mucus, especially in your lungs and in your stomach. Lungs First we will talk about how CF effects the lungs. Our lungs are two large balloon like organs that we use to breathe and get oxygen. Lungs are very important organs because our body needs oxygen to survive. Lets take a closer look at the lungs Everybody makes mucus in their lungs to keep them healthy and help you breathe. The mucus in your lungs should be thin and slippery.

But when you have cystic fibrosis, the CF gene tells the glands to make mucus that is very thick and sticky. This sticky mucus makes you cough a lot.

Germs and bacteria can get stuck and grow in the thick sticky mucus.

Germs and bacteria can cause an infection or swelling in your lungs. Swelling and infection make it harder to breathe and can make you feel sick. Living With
Cystic Fibrosis Living With
Cystic Fibrosis Where Can I Find
Out More? What Can I Do? What Is
Cystic Fibrosis? First We will find out.. When you see this chalkboard.. Staying healthy and strong is a little more challenging for kids with cystic fibrosis. When you see this chalkboard, you will find
out what you can do to be a
too! Help to keep your body as healthy as it
can be!! Superkid Superkids! Meet Joe and Carly, Superkids looking after each other! Finally, you can find out where to find some more information and fun stuff!! You will find out all the special things kids with cystic fibrosis need to do every day. Living With
Cystic Fibrosis Lets find out how kids with CF keep their lungs as healthy as they can be! There are lots of different things that kids with CF do to keep their lungs healthy.

It is very important to look after our lungs and get as much of the sticky mucus out as we can. Chest physiotherapy, is an exercise that breaks up the thick sticky mucus and helps to move it so you can cough it out.

These exercises take about 20-30 minutes and need to be done up to three times a day.

These exercises can be done in a couple of ways. Another way is using a CF vest. The vest has pipes in the front that pump air in and out. When your wearing the vest it makes you jiggle, just like when your getting clapped on the back

The jiggle breaks up the sticky mucus and helps to move it up and out of your lungs.

The clapping is called percussion.
This exercise is called chest percussion therapy; or CPT for short. Parents or an adult can clap on your back and chest with their hand to make you jiggle. The clapping sends jiggles all the way to your lungs which help break up the sticky mucus and move it up and out of your lungs. This is how you hold your hand when your doing CPT. Sometimes kids with CF feel worried about coughing lots at school
Do you worry that the other kids might think its strange? Remember: coughing up mucus is a good thing!! It means that all the bad germs and bacteria get stuck to the mucus are out of your body! You just have to remind the other kids that coughing is ok, and that it is a really important thing for kids with CF! Keeping some tissues in your pocket and drinking lots will help! Another thing that kids with CF often need is a nebuliser. Nebulisers are used to take medicines that open up the pipes in your lungs nice and wide so you can breathe easier and cough up the thick sticky mucus. Nebulisers turn the medicine into a very fine mist that you can breathe right down deep into your lungs where it is needed the most All you need to do is pop a little tube into your mouth or pop on a mask

Then you breathe in and out nice and deep to get the medicine all the way down into the air sacs that we were talking about earlier

This is what they look like: Other things that are great for looking after the lungs of kids with CF are: Exercise Coughing Deep Breathing Flutter Exercise is really important for kids with CF.
The vibration from running around playing helps break up and move the sticky mucus and get it out of your lungs. Coughing is also good for kids with CF. It helps move the thick sticky mucus up and out of your lungs. It doesn't feel nice though, and can make your chest hurt a bit after a while, so just do a little bit at a time and then have a rest! Deep breathing means breathing in as far as you can!
When you breathe in really far your lungs expand like balloons. This helps loosen the thick sticky mucus off the wall of your lungs.
You can even try huffing when you breathe out! A flutter device is a small tube that has a ball inside.
You put the end of the tube in your mouth and breathe in, and then breathe out as hard as you can.
The ball inside rattles around when you breathe out making little vibrations into your lungs.
The vibrations help break up the thick sticky mucus. Here you can see the ball rattling inside the flutter device. This is what a flutter device looks like By Sarah Bradley
Bachelor of Nursing Student - La Trobe University

Welcome to this interactive presentation about Cystic Fibrosis.

This is a great resource for any primary school aged child who has Cystic Fibrosis, their siblings, friends or even their classmates!

The viewers would benefit most with an adult present to work through this presentation with them so they can clarify and ask any questions. It is a lot of information to take in!

There are resources at the end of the presentation for children, parents and teachers to find out more.

Simply use the left and right arrows on your keyboard to move forward and backward through the presentation.

The up arrow zooms in closer, and the down arrow zooms out. When zoomed out you can click on any item for a closer look!

You can watch this presentation in several sittings; depending on the age level of your child. Just right click to start and end the presentation; or to go back to the beginning.

Enjoy! Lungs Stomach Intestines What Can I Do? There are lots of things that you can do to be a Superkid and help keep your lungs as healthy as they can be! We all want to be Superkids like Joe and Carly! Here are 5 things you can do to keep your lungs healthy: This is Oli and Nush. Oli has cystic fibrosis. Chest Physiotherapy You can still have fun while you are doing your chest physiotherapy. Spending lots of time doing chest physiotherapy every day can be REALLY boring! But physiotherapy is super important to keep the sticky mucus and germs and bacteria out of your lungs that make you sick. You can't have fun and play when you are sick! Look at these Superkids! Coughing and Breathing Exercises There are lots of fun ways that you can do breathing exercises! Blowing Bubbles! Breathe in really deep and blow out as far as you can! Cotton Ball Races! Blowing up Balloons! Blow Painting! Bubbling Water! Blow through a straw and see how far you can blow a cotton ball along the table! See who can move the cotton ball the fastest! Blow into a cup of water and see how many bubbles you can make! Put some blobs of paint on a piece of paper and blow through a straw to spread the paint around! Make a cool picture! Blowing up balloons is good fun! Blow out as hard as you can! Wash Your Hands Washing your hands keeps all the germs and bacteria away and keeps your lungs really healthy. Washing your hands often is always important Lets watch a short movie and learn how to wash our hands really well! But it is even more important for kids with CF! You can wash your hands anytime, but you should make sure you wash your hands:
Before you eat or touch any food
After playing outside
After you go to the bathroom
After you blow your nose or cough
If they are dirty Exercise Some days you may feel really tired or out of breath. Just have a rest before you go back out and play. Exercising lots is important for kids with CF Exercise just means moving your body! There are lots and lots of ways we can move our bodies! Exercise helps move the thick sticky mucus up and out of your lungs Just get out there, have some fun and get your body moving! You might like running, jumping, skipping, playing soccer, dancing, swimming, kicking the football. Its up to you!! Taking Your Medicine It is your job as a Superkid to look after your lungs by taking your tablets and using your nebuliser when it is time to. There are lots of medicines that help keep kids with CF healthy. You might not like taking them and some of them might taste yuck But they all have very important jobs to do and your body really needs them to stay healthy. Now we have learnt all about how to keep our lungs healthy

It is time to find out how CF effects the stomach! Stomach Now its time to find out how CF effects the stomach Lets have a closer look at the stomach Like they talked about in the video, the stomach is a stretchy sac where the food goes first after you swallow.

The stomach's job is to break down the food into tiny little pieces, like taking apart a jigsaw puzzle. It does this by mixing and churning, and also gets some help from enzymes and gastric acid (or gastric juice).

Once the stomach has turned the food into a liquid mixture, it is then sent on to your small intestine. The enzymes that help break down your food mostly come from an organ called the pancreas. The pancreas has a little pipe called a pancreatic duct, that connects it to the small intestine. This pipe is where the pancreas sends the enzymes to help break down your food. The thick sticky mucus that you get when you have CF can block this little pipe and stop the enzymes getting to your food in the intestine. If the enzymes can't get into the intestine to make the food smaller, it will be too big for the body to use and the body misses out on all of the important nutrients and vitamins. When the food is in the intestine, enzymes help break the food down even smaller so all of the nutrients and vitamins can be drawn out of it and back into your body. The small intestine is the long squiggly pipe that moves food through your body. Living With
Cystic Fibrosis Lets find out how kids with CF get the nutrients and vitamins they need to stay as strong and healthy as they can be! You will always have CF, but there are lots of things that you can do to stay as strong and healthy as you can be! In this special CF pyramid it shows that people with CF should eat lots of all types of food.
As you just learned, foods high in fats and calories such as the sweets, meat and dairy are important for kids with CF so they are in the eat most category! Food pyramids can help us work out how often we should eat certain foods. The food pyramid for kids with CF is a little different. Lets take a closer look! You will probably have seen a food pyramid like this one. People without CF should mostly eat breads, cereals, fruits and vegetables. They should sometimes eat meats, eggs and dairy; and should only occasionally eat sweets, butter and things high in fats. People Without CF People With CF Food Pyramid The first thing kids with CF can do to get more nutrients and vitamins is eat lots! That sounds pretty good right?! All of the cells in your body need energy to do their jobs.
The energy that we need to run around and play comes from the nutrients in our food. Lets watch this video of Sully the cell who will explain this a little bit more. Only some of the food you eat gets broken down to energy when you have CF. You need to eat more food to get enough energy to all of your cells! To get enough energy for all the cells in your body, kids with CF need to eat foods that have lots of fat, calories and salt in them. Calories as you know = Energy Enzymes When the pipe in the pancreas is blocked and enzymes cant get through to break down you food, you need to take enzymes in a tablet at meal times. Taking the enzyme tablets will make sure that your body can get as many nutrients and vitamins out of your food as it can. Remember, the cells in your body need lots of nutrients and vitamins to stay as healthy as they can be! You might also have to take vitamins in a tablet or a syrup once a day if your body can't get enough on its own. All of the different vitamins have important jobs to do in your body. If the other kids say things to you it is probably because they don't understand. You can help them by teaching them the special CF pyramid! Some kids with CF worry about being different and eating different foods to the other kids. The other kids will probably think you are lucky because of all the yummy foods you get to eat!! Sometimes it can get a little tricky to remember which tablets you need to take and when.

A pill box is really helpful for taking your tablets at the right time All you have to do is open the right day and time on the box, and take the tablets with your lunch. An adult puts in the right number of enzymes and vitamins for you to take when you are having lunch at school. You might use one already that looks something like this. Taking Your Tablets What Can I Do? There are lots of things that you can do to be a Superkid and help get all the nutrients and vitamins that your body needs and keep it as healthy as it can be! Here are 4 ways that you can look after your body when eating and drinking! Eating The Right Foods! Remember kids with CF need to eat lots of food that is high in fats, calories and salt.

You can help keep your body healthy by choosing the right foods. Eating lots of snacks throughout the day is a good way to get the energy your body needs.

Here are some yummy high energy foods that are really great for kids with CF: Taking your Enzymes & Vitamins Like the medicines for your lungs, it is really important that you take all of your enzymes and vitamins.

You need to take the right amount at the right times.

If you use a pill box like we talked about earlier it can be really easy and fast to take your tablets when you have to.
The other kids will hardly notice! Drinking Lots! It is really important to drink lots when the weather is hot.
Sometimes you might need an energy drink, like a Powerade, to put the salt back into your body. Do you remember back at the start when we first talked about CF? We said that CF sends the wrong job instructions to your sweat, tears and mucus glands. Kids with CF loose lots more salt in their sweat than kids who don't have CF. You get sweaty when you are hot, like when your running lots! Brushing Your Teeth Lots of the foods that are high in energy are also high in sugar. Sugar can damage our teeth.
We also want to stop any germs and bacteria from going down into our lungs.

Making sure we always brush our teeth keeps all of the sugar and germs away to have healthy teeth! Everyone brushes their teeth, morning and night, but it is extra important for kids with CF. Where Can I Find
Out More? Information For Kids! CF Voice CF Voice is a great website for all age groups. It is full of fun videos, games and activities for people to learn about cystic fibrosis. www.cfvoice.com Kids Health Purple Soup Kids health has some great information on cystic fibrosis. It also has some videos that show you how all of the parts of your body work. Purple Soup is a great organisation that run activity days and camps for kids with a chronic illness such as CF Learn About CF Learn About The Body http://kidshealth.org/kid/health_problems/heart/cystic_fibrosis.html http://kidshealth.org/kid/htbw/ www.purplesoup.org Information For Adults! Cystic Fibrosis Victoria Cystic Fibrosis Victoria is a fantastic organisation. They have many informative resources and offer numerous support services such as counselling, support groups, and financial aid. www.cfv.org.au Airways For Kids Invisible Illness Curtin University offers a great pdf booklet that assists you to work with your child to achieve successful airway management.
It works through various chest treatments and helps you to encourage your child to be involved in looking after their health. Invisible Illness is a great website about children and young people with chronic illness. It has some great information and tips on how to manage CF in the school environment http://www.chronicillness.org.au/invisible/cf_a.htm http://physiotherapy.curtin.edu.au/download.cfm?fileid=149 Cystic Fibrosis Queensland The Cystic Fibrosis Queensland website offers parents and teachers a school information pack. This information pack discusses CF and some of the common issues that can arise for a child with CF at school. http://www.cysticfibrosis.org.au/pdf/CF_School_Info_Pack_2005_rose.pdf 65 Roses Day The 65 Roses Day website assists in raising funds for research and support services for cystic fibrosis. There are some inspirational stories, information about cystic fibrosis, updates and ways that you can get involved. http://www.65rosesday.org.au/ I hope you have all enjoyed this fun and informative presentation about Cystic Fibrosis.

I hope you have learnt a lot and can share this with your family and friends.

Remember kids, there are many things that you can do to keep your body as healthy as you can

Try your best and don't forget to ask lots of questions.

Always tell an adult if you are getting bullied or aren't sure of something.

Bye for now superkids!! Its probably a bit of a funny thing to talk about and might even be a bit embarrassing, but we want to know everything we can about CF right?!

Because the food does not break down into the really small pieces your poop might be a bit lumpy. Don't worry this is completely normal.

You might also get stomach aches and fart (or pass wind) a fair bit. It is just the gasses escaping from your digestive system. This is also normal so try not to get embarrassed! Poop and Farts
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