Understanding Urea Cycle Disorder (UCD) Audiobook
Kyle takes a journey through the human body to learn more about living with urea cycle disorder (UCD), in this audiobook version of our award-winning comic book Understanding Urea Cycle Disorder (UCD).
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Rebecca: Hi there and welcome to a special audiobook installment of Jumo’s In My Words Podcast series.
At Jumo, we produce everything from comic books that explain difficult medical conditions, to videos where families share practical insight and their stories of hope. Learning how to manage life after a diagnosis can be stressful and confusing, and we aim to make that a little easier. From epilepsy and Crohn’s disease to fractures, MRIs, and lots in between, we’ve got you covered.
Ok, let’s get started. Today’s story comes from our Understanding UCD comic book. UCD stands for Urea Cycle Disorders. It can be hard to explain any medical condition to your friends; but when that condition is a rare disease that not many people have heard of, it can be even harder. Listen in as Kyle joins the Medikidz superheroes to learn all about his condition and become empowered to explain it to others.
Boy 1: This soap makes my fingers smell like orange Jello.
Andrew: I know, it makes me so hungry! Good thing it’s time for lunch.
What do you say, Kyle, are you ready to--eat?
Boy 1: Where’d he go?
Andrew: Man, he always disappears around lunch.
Boy 1: I know! That guy’s like a ninja!
Kyle: I’m not a ninja. I just don’t know how to explain my condition…or my medicine!
Made it and no one saw me!
Nurse: [GASP!] Kyle, I didn’t hear you come in!
Kyle: I didn’t want my friends to see me. I don’t know how to explain why I need medicine.
It’s bad enough I can’t eat what my friends eat.
Sometimes I just want to eat whatever I want and not take the medicine!
What’s the worst that could happen?
Gastro: Well, if you don’t take your medicine...a lot can happen, actually! Which is why we’re here to help you understand your urea cycle disorder, or UCD for short.
Kyle: Gastro! But where are the other Medikidz?
Gastro: Oh, they’re hanging around. Come on, we’ve got lots to show you!
Kyle: Whoa, so cool! You can come get me in this anytime!
Axon: Buckle your seatbelts please. We shall be traveling at 186,282 miles per second!
Pump: That’s the speed of light to you and me, or super fast to Gastro.
Axon: Indeed. Hold on to your--well-- everything!
Kyle: Is it a problem if I can’t feel my face?
Chi: Don’t worry, that’ll go away when we stop.
Speaking of problems, a UCD is a problem with how your liver handles protein.
To show you what happens in a UCD, we’re taking you to the only planet shaped just like a human body...Mediland!
Axon: Hang on everyone...we’re going to the liver!
Pump: Did we have to go through the nose during cold season? You got the jet into this mess, so you can clean it!
Chi: But it’s so--hmmm--I can’t think of the scientific word for yucky.
Narrator: Inside Mediland’s liver...
Kyle: Sure is busy in here! Who are these guys?
Pump: They’re cells. Your body has tons of them. They all do different jobs. Together, they make sure your body works properly.
Kyle: Whoa, what’s up with him?
Pump: Being a cell is hard work! To do their jobs, your cells need protein.
Gastro: They get this from your food and from your body’s muscles.
If I know Mediland’s meal times--which I do--protein should be coming right about...now!
Cell 1: Lunchtime!
Axon: As your cells use up the protein, they leave behind ammonia in your blood.
Cell 2: BUUUUURP! Oooh. Excuse me.
Chi: This is where our good friends, the enzymes, come in.
Enzyme 1: Urgh, what a mess! Have these cells ever heard of a trash can?
Enzyme 2: I love a mess! The only thing I love better than a mess..is cleaning it up. Let's do this!
Would you mind breaking this down, muscle man?
Pump: As you can see, enzymes help your body get rid of the ammonia.
Axon: Enzymes break down the ammonia so it doesn’t cause any problems.
This is what normally happens.
Kyle: That’s so cool! I--oh no--Look out!
Gastro: Looks like Mediland just had another meal!
Axon: Who turned out the lights? I demand the lights be reinstated!
Skindy: Nice moves!
Kyle: Thanks, but look at this place! It’s a mess again!
Well, at least we know the enzymes will break down the ammonia.
Umm, why aren’t they doing anything?!
Skindy: This is what happens with a UCD, the enzymes don’t work properly.
Enzyme 1: Who’s a cute little piece of ammonia? You are! Yes you are! Yes you are!
Enzyme 2: I live in here now!
Abacus: This means the ammonia is not broken down and so it builds up and up, causing problems for your body.
Chi: Let’s go see!
Narrator: Inside the brain…
Kyle: Whoa, it’s worse here than it was in the liver!
Chi: Yup, and the buildup of ammonia here in your brain can change the way you behave.
It can make you feel annoyed or you might find it difficult to concentrate and to keep up at school.
Gastro: This means you can get behind with your homework.
Brain Cell 1: That's it! I can't work in these conditions!
Brain Cell 2: OW!
Fine, you wanna throw stuff...let's throw stuff!
Kyle: If this is what the ammonia does in my brain, no wonder I have trouble in school!
Axon: Indeed, and having lots of ammonia in your body can cause other problems too, like...
Pump: ...feeling confused, having headaches, and feeling sick with nausea and vomiting.
Skindy: You might also have trouble sleeping, so you feel tired all the time.
If you ever feel like you are having any of these problems, you should tell an adult.
Chi: These are all clues that your UCD is causing problems inside your body.
But to know for sure, some tests are done.
Kyle: Whoa! My friend Ike thinks he’s so cool because he has a tree house.
Wait till I tell him I went to a space station!
Pump: To check on your UCD, your doctors do some tests, like checking your blood for ammonia.
Skindy: Once the tests confirm your UCD is causing problems inside your body, your treatment starts.
As you know, the medical team first looks at the foods you eat to see--
Narrator: Alert! Alert! Incoming!
Kyle: Uh-oh. Flashing red lights? Flashing red lights are never good!
Are those meteoroids?!
Axon: No...They’re MEATBALLS!
Kyle: Meatballs? What’s the big deal?
Axon: The reason your doctors look at your food is because too much protein in your diet means too much ammonia!
So your diet needs to be just right.
Pump: We can’t let Mediland eat the meatballs. They have too much protein and will make its UCD worse!
Quick, to the laser cannons!
This is why the medical team helps you and your family plan your meals so they contain the right amount of protein for you.
All right, let’s blow up some meatballs!
Skindy: They also make sure you still get plenty of energy from your food.
Look out! Meatball at 12 o’clock!
Kyle: Don’t worry! You act like I’ve never shot meatballs out of the sky with lasers before...which I actually haven’t.
Axon: It’s important to have the right food balance so your ammonia doesn’t keep building up and cause more problems.
Your medical team will keep a close eye on the amount of ammonia in your body by checking your blood regularly.
Kyle: That was the last meatball!
Axon: Excellent. Your medical team might also give you...supplements and powerhouse formulas!
Supplements and powerhouse formulas are types of food and drink that help to make sure your body gets all the energy and nutrients it needs.
Gastro: It’s super important to stick to your diet. That’s the best way to avoid problems.
You may also need medicine to get rid of the ammonia.
You can get the medicine as a powder, tablet, or liquid.
The doctors will keep a close eye on you to make sure your treatment is working.
Abacus: If you aren’t able to swallow the medicine, you may get it through a tube that goes straight into your stomach.
Kyle: I’m glad there’s stuff to help me with my UCD, but it sure is hard not being able to eat all the stuff my friends eat.
Chi: I know, and I know that always having to take the medicine can be hard too.
Axon: Indeed, and feeling different from your friends can make you feel alone.
But, you need to remember...you’re not actually alone!
There are other children all over the world who live with a UCD.
They may have different problems depending on how severe their UCD is.
Axon: Just because you can’t have lots of protein doesn’t mean you can’t have healthy foods, like fruits and vegetables.
It’s very important to stick to your diet and to take your medicine exactly like your doctor says.
Gastro: That’s the best way to feel better and stay better!
Skindy: It’s also the best way to prevent future problems, which means you’ll still be able to have fun with your friends when you’re older.
Kyle: Hmm--Maybe it’s time I tried explaining all this to my friends instead of running away from them.
So why did I get UCD in the first place? Did I do something?
Axon: Absolutely not! UCD is no one’s fault.
It’s actually caused by a problem with some of your genes, which are instructions for everything your body has to do.
In UCD the instructions for making some enzymes are wrong, so they dont work properly.
Kyle: Well, they might not be working, but man can those enzymes play ball!
Okay, you’ve told me a whole lotta stuff about UCD. Let me make sure I’ve got it right.
Cells in my body use up the protein in my food and leave behind ammonia in my blood.
Usually, enzymes break down the ammonia.
But in UCD, my enzymes aren’t working properly so I can’t break down the ammonia.
This causes problems for my body.
To check for a UCD, the doctors did some tests.
My treatment means I have to be super careful about what I eat.
I also might need to take medicine, just like my doctors tell me to.
The doctors will keep a close eye on me to make sure the treatment is working.
Watching what I eat and having to take medicine can make me feel different to my friends.
But I’m not alone! There are other kids who have to do the same things as me.
Sticking to my medicine and diet will help make sure that I feel okay and help my body work properly.
That way, I’ll stay healthy and be able to have fun with my friends!
Chi: Nailed it!
Axon: Well done, Kyle. I shall now send you back to school!
Kyle: Thanks, Medikidz! Now that I understand my UCD, I can finally tell my friends!
I’m back! Now to find my friends and--what the--?
Boy 1: Thanks nurse, I’ll see you again next--
What are you doing here?!
Kyle: What are you doing here?!
Boy 1: I--er--well. Okay, you caught me. I have asthma. I didn’t want you guys to know.
Kyle: Dude, trust me. I completely...understand!
ANDREW! What are you doing here?
Andrew: Huh? Don’t you guys go to class through the ceiling?
And--err--I may have a small problem with hayfever and came to get some medicine.
Kyle: I think we need to have a long talk!
Skindy: Looks like a little medicine and a little knowledge can go a long way!
Rebecca: Thanks for listening! We'll be adding new episodes all the time. We also take requests, so if you have a great topic, let us know! Who knows, we may even interview you! Visit us at JumoHealth.com.
In My Words is produced in New York City and distributed worldwide.
In My Words - A Jumo production.