Understanding Sickle Cell Disease Audiobook
Tiahna takes a trip to the bone marrow. She learns how sickle cells are formed, how sickle cell disease affects the body, how to manage pain and other symptoms and how to explain her sickle cell anemia to her teammates when she has to miss a game or two, in this audiobook version of our award-winning comic book Understanding Sickle Cell Disease.
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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 go! Today’s story comes from our Understanding Sickle Cell Disease comic book. Join Tiahna as she takes a trip she’ll never forget: through the blood stream!
Tiahna: It’s bad enough having to miss the game, but not being able to explain to my team why is even worse!
I don’t think I’m ever going to understand my…
Narrator: At Medikidz HQ…
Tiahna: …sickle cell? Whoa—Medikidz!
Skindy: Hey, Tiahna, welcome to Medikidz HQ!
Pump: Heard you could use a little Meducation! Well don’t worry, we’re going to take you down to Mediland and teach you everything you need to know about sickle cell, so let’s get going!
Tiahna: What’s Mediland?
Gastro: Oh, Mediland is awesome. It’s a planet that’s shaped like, and works just like, your own body!
Axon: Sickle cell disease is a problem with your blood, and since your blood is made in your bone marrow that’s our first stop!
Engaging teleporter now!
Narrator: At the bone marrow…
Tiahna: Whoa, who are those guys?
Skindy: Those are red blood cells, or RBCs for short, and they’re made here in your bone marrow.
Chi: RBCs carry oxygen to every part of your body.
Axon: To do this, they need hemoglobin.
All RBCs have instructions that tell them how to make hemoglobin properly.
Red Blood Cell 1: I’m putting mine together now! I have two copies of the instructions, one from each of my parents, to make sure I get it right.
Pump: When RBCs are fully-grown they head out into your blood. Come on!
Tiahna: Not so fast! Remember, I was just in a hospital bed!
Narrator: In the bloodstream…
Chi: RBCs need to be round and flexible so they can move easily through the bloodstream...and their hemoglobin needs to be the right shape too, for carrying oxygen.
Tiahna: Whew, just need to catch my breath. Looks like he has the same idea!
Abacus: Yes, but things are different for RBCs.
Red Blood Cell 1: Ahhh! Well, that’s what I get for taking a break.
Tiahna: What just happened?
Abacus: When RBCs are worn out, they head to the spleen.
Narrator: In the spleen…
Axon: Once in the spleen, the RBCs and their hemoglobin are broken down and recycled.
Your body keeps the good parts and gets rid of the junk.
Come on, let’s head back to the bone marrow.
Tiahna: This is all really cool, but what does it have to do with sickle cell?
Gastro: Well, that’s how things normally work. But in sickle cell disease, the instructions that tell your RBCs how to make hemoglobin are different.
Red Blood Cell 1: This doesn’t look right, but if it’s what the instructions say!
Skindy: This means hemoglobin comes out the wrong shape, which makes your RBCs lose their normal shape too, and become curved and stiff.
Sickle Cell 1: This cannot be good for my back!
Pump: Curved RBCs wear out faster than normal ones, so they are broken down more quickly.
Red Blood Cell 2: But I just got here! Ahhh!
Axon: Hemoglobin gets broken down too. Without enough hemoglobin, your body can’t get all the oxygen it needs.
This causes problems for you, like feeling weak, tired, and short of breath.
Tiahna: What now?
Gastro: Remember all that extra recycling? Well that means the spare parts build up and travel all over the body.
One of these parts is called bilirubin. It can get stuck in your skin and eyes and make them look yellow.
Pump: Spare parts also build up in your gallbladder, causing gallstones...
Axon: …and stomach pains. Oof!
Skindy: The wrongly shaped RBCs get stuck in your bloodstream.
Sickle Cell 2: Aaarg help! I’m stuck!
Abacus: This causes problems for your body, especially pain.
Axon: Medical supplies incoming.
Pump: You may need to take medicines to help your sickle cell disease.
Get ready, Tiahna, we’ve got work to do!
Chi: One drug is hydroxyurea.
This is a strong medicine that mostly comes as a pill.
Sickle Cell 3: Everything hurts!
Sickle Cell 4: Even my aches ache!
Chi: Painkillers help to get rid of the pain. They mostly come as pills or liquids.
Sickle Cell 3: Whoa, I feel good!
Sickle Cell 4: Me too! Thanks Medikidz!
Abacus: If you have a lot of pain, you might need to go to the hospital.
There you’ll get stronger painkillers through an IV.
Axon: Heat can help too, like taking a warm bath or putting a warm towel on the painful area.
Sickle Cell 5: Oooh, that is nice! Can you go a little lower and to the left?
Tiahna: Who are they?
This is where antibiotics and vaccinations come in.
You’ll need these to stop you from getting serious bacterial infections.
Germ 1: I know the best place to infect, you’ll love it! Plenty of room for mucus!
Hey, do you mind? We’re trying to infect stuff.
Tiahna: Not on our watch!
Pump: Antibiotics come as pills or liquids.
Vaccinations are injections that you get once a year. They help prevent infections happening in the first place.
You may also need blood transfusions.
Axon: The transfusions give you extra hemoglobin to top yours up.
You can get them as a slow infusion by IV into your bloodstream.
Red Blood Cell 2: Whoopee! It’s the right hemoglobin!
Tiahna: Extra hemoglobin sounds good, but what’s all this other stuff? It’s everywhere!
Skindy: It’s iron. Blood has iron in it, so having blood transfusions means you can get too much iron.
But luckily…there are medicines that grab the extra iron in your body and get rid of it! They’re called iron chelators, and they come as infusions or pills, or as tablets that you mix with juice or water.
Tiahna: If this thing does clothes it could help me clean my room.
Narrator: In the bone marrow…
Gastro: You may also need to take vitamin pills called folic acid. They help your body make new RBCs to replace the ones that have been broken down.
Pump: Our work here is done, Axon, get us back to HQ!
Axon: Activating teleporter now.
Narrator: Back at Mediland HQ…
Pump: It’s important when you have sickle cell disease to keep as healthy as possible. This means doing regular exercise...
Gastro: …eating healthy…
Skindy: …drinking plenty of water…
Axon: …staying warm and avoiding chills…
Chi: …and getting plenty of rest.
Abacus: It’s also important to have regular check-ups with your doctor and hospital team.
They’ll keep a close eye on you and make sure your medicines are doing their jobs properly.
Tiahna: But why did I get sickle cell in the first place?
Axon: Sickle cell disease is passed down in families, through your genes.
Your genes carry the instructions for your RBCs.
Tiahna: I’m glad I understand my sickle cell now, but having it is still tough.
Skindy: We understand. Taking lots of medicines can be hard...
Chi: and regular blood transfusions mean you have to spend time in the hospital, which means missing time with your friends.
Skindy: Sometimes, you might feel frustrated or angry, but you’re not alone.
Chi: Yeah, lots of other kids are going through the same thing as you.
Tiahna: That’s true!
I’ve actually made a few cool friends in the hospital who have sickle cell!
Chi: It helps to talk to your family and friends about how you feel so that they understand what it’s like for you.
Pump: And remember, having sickle cell disease doesn’t have to stop you playing with your friends or doing the fun things you like to do.
Tiahna: Thanks Medikidz! I think I’m ready to get back to my room, rest up, and get better!
I can’t wait to see my team. I finally feel like I can explain my sickle cell disease!
I’m going to do everything my doctors tell me so I can get back to my friends, back to my team...
Narrator: Two weeks later...
Tiahna: ...and back in the game!
Rebecca (narrator): 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.
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