Cassandra Trimnell, Patient Advocate, Sickle Cell 101 

 Dr Smith, from a physician’s perspective, what take-home messages do you want to share with our audience?

 The patients have done an excellent job saying what self-care patients need to do to make sure they don’t get the complications of the disease. You heard the science. You heard Sickle Cell 101. You’ve got to drink fluids to keep the cells from sickling. You have to stay hydrated. You have to get oxygen in your body to keep the cells from sickling. Don’t climb mountains and don’t scuba dive, because that’s going to cut your oxygen. If you’re going to fly, you might want to take oxygen with you.

You’ve heard them say, “Eat your vegetables.” That was pretty profound. Diet matters. Folic acid is a vitamin that patients with sickle cell disease take. You can get that in food. High-folate foods are important. A prudent diet is important because you want to keep your body well maintained. You heard, “Take your medicine.” These are all very basic but fundamentally important things. If you don’t like your medicine, talk to your doctor about it rather than just not taking it, because you could be doing damage to your organ. You might end up with something far worse than what you originally had. Take your medicines, and talk to your doctors about your medicines. Then seek out education.

I also want to talk to the people out there who don’t know their sickle cell status. They don’t even know if they have sickle cell trait. Please find out. Find out your sickle cell status. Get that hemoglobin electrophoresis done so you can say for sure whether you have the possibility of passing this disease on to your child. If you have sickle cell disease, you don’t need a hemoglobin electrophoresis to figure that out. There’s a possibility of you passing it along.

If you have sickle cell trait and you know it, you need to be sure before you have a baby that you have a discussion with your mate about whether they have sickle cell trait. Because the 2 of you, if you have it, may pass the disease along to your child. I’m not telling you not to have a child. I’m telling you to take everything with your eyes open. I want to make sure patients understand that we’re not telling them not to have babies, but we’re also telling them to be smart. There’s this phrase, “Be sickle smart.” To sum it all up, the patients have said it best. I’m not sure who originated this, but I heard a patient say, “I have sickle cell disease. Sickle cell disease does not have me.”

 Amen. That’s true. Do I have an agreement, Jamaal? Do you agree with that?

 We’re going to give Jamaal the last word because he’s the star of this show. Jamaal, you have a minute or so to tell the audience anything you want to share with us. We want to listen to you because you’re the rock star here. Go ahead and give us your words of wisdom for doctors, patients, advocates—anybody you want. You can do all of them.

 For the patients, I just want to say to listen to your doctors. Also, listen to yourself. Listen to your instincts and what your body is telling you. Always listen to that. For the doctors, I want to say to listen to your patients. Sometimes they don’t exactly tell you what’s going on. You may have to ask sometimes. Sometimes patients are looking for you to ask a little more.

 I would like to say thank you for supporting us. I would also like to say that sometimes you have to listen to your child also. Your child, especially with sickle cell, sometimes doesn’t like to tell you everything. You definitely have to listen to them and talk to them gently to make sure you get everything.

 Thank you so much, Jamaal. Your mama has heard you, because she brought that up first. She said, “Listen to your child.” You must have told her that before. She got that. Thank you so much. To sum everything up, it’s about listening. We have 2 ears and 1 mouth for a reason. Even though I like to talk a lot, I need to use my ears more as a physician. All providers need to use their ears more and also their eyes. You can listen with your eyes. You can sense by looking, perceiving, and watching when your patient has more to say, or when they’re not giving you all the information. That’s a skill. If you’re going to work in sickle cell disease, you really have to work up that muscle, where you’re listening with all your senses and not just your ears.

The goal of this meeting was for us to hear from you about how sickle cell impacts your life and how we can do a better job of supporting this community as providers and as a general population. Thank you so much. Thank you, Dr Smith. Thank you, Sherry. Thank you, Cassandra. And thank you so much, Jamaal, for giving us your time and attention. We appreciate you.

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Wally Smith, MD, shares his take-home points for patients with sickle cell disease and urges to get tested for sickle cell trait.  

Physician Advice for Patients With SCD 

 We’re going to talk about take-home messages. We’ve spent the past hour talking about sickle cell disease, how it impacts your life, your experiences, Cassandra’s experiences, advocacy, and what your mom had to go through. We learned about the medications that are available, how they work, and how they help sickle cell disease. We learned that the goal is to arrest the problems so they don’t continue, treat more than just the pain, and that sickle cell is more than just pain.

Jamaal, what are 2 or 3 take-home messages that you want to share with the audience? What would you tell a young adult who is being diagnosed and didn’t know they had it? Some people don’t know they have it until they’re teenagers. What would you tell this person? How would you encourage them?

 I’d encourage them by first telling them, “Don’t be intimidated. You should never be intimidated by it. I know it can be intimidating, but never let it intimidate you. You should take care of yourself. Dress warmly if it’s cold outside. If it’s warm outside, drink plenty of water or something like Gatorade. Take your medicine, and look after yourself.” That’s what I would do. I’d encourage them to look after themselves. I’d encourage them to speak with someone daily about their feelings, their mood, and how they feel in general.

 Wow. That right there is so profound: Take care of yourself. I love that. Self-love is the most important thing. Whether it’s physical, emotional, or environmental self-love, take care of yourself. Thank you so much, Jamaal.

Sherry, what advice do you have for other mothers who have children with sickle cell? What would you say to encourage them on their journey?

 I’d tell them to be themselves. Listen to your children. Listen to the doctor. If you need to talk to someone, reach out and talk to other mothers with kids with sickle cell. Be there for one another. When I was in that situation, I didn’t find any other mothers to talk to them. Please find other mothers who are going through the same thing that you’re going through and talk to them, like Jamaal said about the group on Facebook. I’m also in that group. I see people my age and mothers on there, so I’m getting a lot of feedback from them also.

 That’s a huge blessing. You just said people your age, right? Sometimes we put you in the bucket of “mom,” right? We forget that you’re also a human being and you also have sickle cell. You need your own support. Not having it when he was coming up was probably very hard. The other thing you said was, “Listen to your child.” That’s a profound statement, that mothers, fathers, and caregivers should listen to their children. When they’re going through the emotional stuff, they’re going to tell their mama first. Before they tell Dr [Wally] Smith or Dr Ifeyinwa, they’ll tell their mama first. They may not say they need help, but as a mom, you know when your baby is telling you something. Listen to your child. That’s very important. Thank you so much for that.

Cassandra, what advice do you have for parents, families, and patients regarding the importance of advocacy and how it can be an important part of their self-care and care for others?

 I truly believe advocacy is fundamental to better outcomes in living with sickle cell. Advocacy is paramount. You can get started by taking baby steps. It’s not like you have to wake up the next day and take on everything at once. Advocacy is as small as scheduling an appointment with your doctor. It’s as small as a Google search about what ischemia is, and just educating yourself. It’s as small as providing advice to someone else living with sickle cell disease. I’d encourage people to start with baby steps and see where it takes you. Sickle cell is not a death sentence. Find your life outside sickle cell disease. That’s very important. Sometimes it can be your whole life, but it really is just 1 component of it. Finding out who you are and what your life is outside sickle cell is important too. It’s an important part of advocacy as well.

 Thank you so much. I love what you just said. Sometimes it can be your whole life, but don’t let it be your whole life. It’s as simple as educating yourself, or doing a Google search on a simple thing like hemolysis, hemoglobin, or “What is sickle cell disease?” It can be very simple. Sometimes people think you have to eat the whole elephant at once. It’s really just 1 tiny bite at a time. Thank you so much for that.

A patient, patient advocate, and caregiver provide advice to those in the sickle cell disease community based on their own experiences.  

Advice for Patients With SCD and Their Caregivers 

 Dr Smith, do you want to segue into what she said? Pain is half the story. You’re sitting there while sickling is happening, and that made her choose to go on hydroxyurea. How do you approach this discussion with your patients, being only half the story?

 I talk to patients with pictures. I try to show them the science. I want to educate the patients so they understand what’s going on in their body. I’ll show a picture of a red blood cell and a picture of an abnormal sickle cell. I’ll show them the graph of their red blood cell size. There’s this lab value that’s called the MCV [mean corpuscular volume] that tells you how big your cells are. When you take hydroxyurea, the MCV will go up and the white blood cell count will go down. I will show them the graph of that. That’s eye-opening for patients. Sometimes they’ll go, “Oops, busted,” because they didn’t recognize that this drug was actually doing something to their cells. When they see that, they say, “Oh, I guess you’re right. I didn’t take my medicine the way I was supposed to the last couple of months. A year ago, I was taking it well, because that’s when my MCV was up. And that’s when my white blood cells were down more.” And I say, “Yes, and that’s when you weren’t destroying cells in your body as much. So let’s get back to taking it.”

For some patients, that still doesn’t work, because they’re just put off by having to take the medications. But for those who catch that, it’s eye-opening. Then they start paying more attention to how they feel. They start correlating how they feel to when they take medications. I completely agree that when patients understand that knowledge is power, that pain and anemia are both huge parts of sickle cell disease, and that we need to attack both with medications that stop the sickling process, they become my ally. Because before then, it’s me being mama. “Eat your vegetables.” “Why, mama?” “Well, they’re good for you.” “How do you know? Nothing happened when I ate my vegetables.” That’s the way it is with hydroxyurea. Nothing happens on the day you take the hydroxyurea, so you don’t have that immediate feedback. With pain medicine, something happens the day you take it. You tend to want to take the pain medicine and not want to take the hydroxyurea. It should be the other way around. You really want to take the hydroxyurea so you don’t have to take the pain medicine.

 Absolutely. Thank you so much. To wrap up this segment, I want to go to Jamaal. Jamaal, what resources, support group, or community-based support have you found helpful as you deal with sickle cell disease? Have you been a part of a support group or sickle cell community agency?

 I have never been a part of a sickle cell support group. But now on Facebook, I’m part of a sickle cell group. It’s a great group where everyone shares information about symptoms, questions about medications, or just talks about how they’re feeling that day. It’s great to interact with many more sickle cell patients. For a long while, I felt like I couldn’t find people who share sickle cell. Being in that group, I feel better because I know there are people out there who are experiencing the same thing I am. I get feedback from them, and they tell me what works and what doesn’t. I can generate from there.

 That’s awesome. I don’t think we were as appreciative in the past about how important it is for you to find your tribe and other people who are going through what you are, as Cassandra mentioned. I once had 3 of my young adult patients who were in high school and would always come to the clinic on different days. They were in the same high school, in the same grade, and on the same team of some sport they were playing together, but they never knew they each had sickle cell. Then we had a group event 1 day and all 3 came. They were like, “You got sickle cell? You got sickle cell?”

What was so funny was that they started coming to me and saying, “He wasn’t drinking his water.” “She put away her sweater.” They began to look out for one another. When someone would miss school, they’d pass along the homework or paperwork from the teacher. They were a huge support for one another. They ended up graduating together. They really helped one another out in the last 2 years of high school. It’s really important to find your tribe because that support is invaluable. Doctors hang out with one another, moms hang out with one another. In college, the juniors are hanging out with juniors and seniors with other seniors. They go to the prom together. That’s how it is in all aspects of life. Having a tribe, whether it’s in person or virtually, is a really important thing. Thank you so much for sharing that.

A patient with SCD describes how connecting with others in the sickle cell community via social media has brought him comfort.  

Educating Patients With SCD About the Associated Pain and Anemia 

 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?

 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.

 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?

 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.

 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.

 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.

 Wow, that’s awesome. Thank you so much for sharing that. Cassandra?

 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.

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

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

Cassandra Trimnell, Patient Advocate, Sickle Cell 101

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