The Sickle Cell Disease Patient Journey - Episode 14

Patient Advocacy and Education in SCD

June 11, 2021
Ifeyinwa (Ify) Osunkwo, MD, MPH, Atrium Health

,
Wally Smith, MD, Virginia Commonwealth University

,
Jamaal Bailey

,
Sherry Bailey

,
Cassandra Trimnell, Patient Advocate, Sickle Cell 101

Patient advocate, Cassandra Trimnell, shares her perspective on becoming an advocate for the sickle cell disease community and continuously learning about it.

Ifeyinwa Osunkwo, MD, MPH: Cassandra, you said you chose to be an advocate for self-preservation. What did you have to do? A lot of people with sickle cell disease want to be advocates and want to do it the right way. There may be a hesitancy in calling themselves advocates because they don’t know where to start. Give our audience a couple of tips on what they need to do. What steps do you take to be a true advocate? You don’t just represent yourself. You also represent the community in general, right? When Cassandra speaks, people listen. How do you become a patient advocate and consultant for the outward community and not just for yourself? Charity begins at home, but once you benefit, how do you do for others? Do you have any training or certification like skill building? What do you need to do?

Cassandra Trimnell: For me, it was that thirst of knowledge about sickle cell disease, starting from the basics and teaching myself why this happens. When I become dehydrated, why am I triggered to pain? It was really understanding the science behind it. That has been so empowering. Then what do you do when you learn something? You teach others and have those conversations. That has been my course of action as I’m educating myself. Information is no good if it just sits with me. I need to educate my family members, my friends, and whoever else is interested in this.

Education is part of it, and then sharing your experience is a huge part of advocacy as well. Sickle cell is not a household name. Hopefully, we’ll get there. This sounds weird, but at the grocery store, I asked the cashier, “Have you heard about sickle cell?” It’s over the top, but that’s how excited I am to share and for people to learn more about it. I try to make it relevant for people as well. Because it’s a rare disease, not everybody is going to care. It’s about finding and educating people on why they should care. Do they carry the sickle cell gene? Do they carry the trait? Make it relevant so that it’s useful to people.

The start of it is educating yourself. Once you educate yourself, you’ll find that you ask a lot more questions. You’ll probably start reaching out to people. You probably get more integrated in some of these webinars at your local CBO [community-based organization]. That takes its course. Then you’re an advocate because you’re able to share your experience and participate in the sickle cell community. I don’t know if that answers the question.

Ifeyinwa Osunkwo, MD, MPH: Absolutely. That has prompted me to ask Jamaal a question. Jamaal, she talked about educating yourself and learning. I saw you nodding your head a lot. Can you tell me 1 thing you’ve learned about sickle cell disease that you didn’t know in the past 2 or 3 years? Something you always thought was 1 way, and then you learned, “That may not be what it is.” What has surprised you about sickle cell disease?

Jamaal Bailey: I’ve learned about different techniques in dealing with the pain. At first, I thought there was only pain medicine. Now there are a lot of techniques you can use, including music therapy. There are many other things you can do to help with the pain that doesn’t involve pain medication. That’s something I’ve learned over the last few years.

Ifeyinwa Osunkwo, MD, MPH: Wow. That’s very profound. That’s 1 of the biggest things I’ve learned as a doctor in the past 5 to 10 years. Every year, I learn more about it. Pain management can’t be only with medication, because after a while, the medicines don’t work as well. Thank you for your comment. I saw you nodding your head like, “Yeah, what she said.” I thought, “Let me ask Jamaal what he thinks.”

Sherry, what about you? In the past 3 to 5 years, is there something about sickle cell that you thought you knew but turned out to be a little different? What is something that surprised you? As you took your 2 sons and yourself to Dr [Wally] Smith, what is something new you’ve learned about sickle cell disease? Please share with us.

Sherry Bailey: When I have pain, I can’t sit still. I see some people just lie there and let the pain build up. But I can’t sit down and let the pain build up. I have to get up and walk my pain off. I’ve been going to the doctor with Jamaal. There’s a lot of stuff I’ve learned. It’s so amazing. I wasn’t taking hydroxyurea at first, but now I am, even though I don’t know if it’s making my hair fall out. But I feel the difference when I take that because I used to be tired. Since I got back on it, I’ve had a lot of energy. Before I was just tired and doing nothing. I knew I had to clean up, but I didn’t have the energy. I had to do a little at a time. But then, as I started taking hydroxyurea, my self-esteem built up a lot.

Ifeyinwa Osunkwo, MD, MPH: Wow, that’s awesome. Thank you so much for sharing that. Cassandra?

Cassandra Trimnell: Sorry, I hope you don’t mind me adding something. I’d really like to stress something I don’t think the community knows. Something that was surprising to me was that pain is only half the story. Hemolysis is the other half. It was very eye-opening that as I’m sitting here talking to you, I’m sickling. Damage is being done. Pain is the traumatic part and really does force you to reckon with it, but what was scary was finding out it wasn’t just pain. It was learning that my organs are being damaged and my blood cells are breaking down. I like to say that pain is half the story and hemolysis is another huge part of all this. It’s something people should consider. I just wanted to say that quickly.

Ifeyinwa Osunkwo, MD, MPH: It’s the patient’s journey, right? Dr Smith and I are the least important people on this panel right now. Absolutely.

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Transcript Edited for Clarity

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