Psychological Factors and Somatic Ailments: Sickle Cell Anemia

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LEDARRIN: When I ask you questions, I want you to repeat the question back to me before you give your answer. So if I say, when was the first time you had a sickle cell crisis, you say, the first time I had a sickle cell crisis was—

MAN 1: I don't want to be that guy to be like, hey, you know I have sickle cell, right? Nobody wants to be that guy.

LEDARRIN: Dude, I feel you. I feel like I'm becoming that dude.

MAN 1: That's in essence our problem, though. We keep it to ourselves.

LEDARRIN: Right.

MAN 1: So that's why we kind of don't have a community.

[BUZZING]

LEDARRIN: Well, I'm getting my hair cut because I'm going to be interviewing some sickle cell patients for my documentary. So I'll be on camera. So yes, I'm nervous.

[LAUGHS]

I hope we'll be used as sort of an educational tool kind of exposing the day to day challenges of living with sickle cell. This is my first time producing a film.

Initially, I wanted to be an actor. I went to a high school for performing arts and majored in theater there and studied drama in undergrad. I got cast into a main stage production at a local theater here, a leading role. And right before the show opened, I had a crisis.

A crisis is what happens when you have a sickle cell flare-up. It definitely changed my mind about what was feasible for me.

Sickle cell anemia is a genetic disorder of the red blood cells. So it's passed on from parents to child. It causes instead of the red blood cells being shaped round, they're shaped like a crescent or a sickle. And because they don't carry oxygen well, they clump together in veins and arteries and cause pain episodes.

It's like having glass in your veins. And every time your heart beats, the glass moves a little bit and cuts. So every day, I'm going to feel some pain, when I wake up in the morning, especially, and when I go to sleep at night, especially.

RAQUEL: Is this right?

WOMAN: Raquel, take one.

LEDARRIN: Tell me about coping with having sickle cell. What's that like for you? How do you cope with it?

RAQUEL: Well, I just try to push through. I just push through because if you wake up and feel pain every single day like we do, you can't just call and I'm not coming to work today. I won't be there.

So I have to suck it up, put on a happy face, don't let the kids feel anything because babies feel what we feel, and I just push through it.

LEDARRIN: I'm 29 now. I was told that a life expectancy for a person with my type of sickle cell was 25. At 25, I had heart failure. And so for me, that was kind of like a self-fulfilling prophecy, in a sense.

The doctor said I would die at 25. Now my heart's failing. After that, I, for about a year and a half, was just completely consumed by depression. I just was kind of waiting to die, honestly. And so I felt like it would be fruitless to spend any more time or energy trying to accomplish any more goals because my time had come.

It's so easy to be consumed by sadness when you're this sick. You have to make a conscious decision not to be. And I just decide every day to have some joy.

Keeping those stress triggers to a minimum—you need to hydrate, take your meds, work out, and eat a healthy diet. I'm helping to develop Above the Crisis, a support group for patients and their families who are living with sickle cell disease. I just want to contribute something meaningful to society.

WOMAN: OK. Good.

LEDARRIN: And now with Above the Crisis, I have a reason to live, really. Go over with me what you have from our last meeting.

WOMAN: So we did education, advocacy, outreach, and wellness and a revision of the mission and the vision.

LEDARRIN: So whatever she doesn't have for that event, we need a list of that stuff. When we have our meeting, I try and cook something at home—take it over to the conference room. I like to do this for my board because it gives me the opportunity to show them how much I appreciate what they do for the organization. Thank you.

[LAUGHTER]

I hope that Above the Crisis long-term can service all the sickle cell patients and families in the Gulf Coast region. We want to provide that network of patients, families, and health care providers to build the community.

WOMAN: So right now, my part was—

LEDARRIN: As y'all know, we're making a documentary. We're about a little more than 50% of the way done filming with patients. Tomorrow, we're going to film our first health care provider, Dr. Juneja. We've got both cameras, right?

MAN 2: Yeah.

LEDARRIN: OK. Perfect. Development. OK.

MAN 3: go ahead and roll all our cameras, please. All right. Dr. Juneja interview, take one. Marker.

LEDARRIN: What would you say is the biggest need for the sickle cell community?

JUNEJA: I think the primary need is to band together. You as a young person coming forward to deal with this problem, that more young patients themselves come out and speak out.

WOMAN: Karall interview, take one.

LEDARRIN: So what psychological effects did sickle cell have on you?

KARALL: A roller coaster of emotions— depression, anger. One thing I liked about my childhood is I had the Sickle Cell Foundation. So it connected me with a lot of people who had sickle cell. So I was able to communicate and connect with those who were living with the same disease I had. So we shared our struggles, and that's very important.

MAN 1: I probably didn't meet another person with sickle cell until I met you. When I was seven, I probably would've wanted to meet somebody that was 30 so I wouldn't have been thinking about every day, oh, am I going to die at 24 like the encyclopedia said?

LEDARRIN: That's what Above the Crisis goes, man. So I really built that network of patients and families with sickle cell again. In Houston, we know that's a big need.

And that's really one of the ways that we're going to be able to share knowledge, experience—forms of medicine and treatment. It's giving me a reason to keep fighting for this. I know that we'll all die, but I just don't want to suffer and die and it be pointless. I want to be for something.

MAN 1: The work Darrin is doing is awesome. It's very, very—what's the word—honorable.

WOMAN: Darrin is an inspiration, and he's worked really hard. And it's not work for himself.

KARALL: He's always social, always lifting someone's spirits—very caring.

LEDARRIN: Great interview. I really appreciate it. Yeah. You're more than your pain. And if you can use that pain to channel something positive, do that.

[LAUGHTER]

RAQUEL: Hey.

LEDARRIN: How come I knew that wasn't going to be it?

Just come back in a little bit.

Oh, yeah.

Thank you. That's a wrap.

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