The Sickle Cell Disease Patient Journey - Episode 9
A patient advocate speaks about connecting with sickle cell disease communities to improve mental health and create disease awareness.
Ifeyinwa Osunkwo, MD, MPH: Cassandra, as an advocacy group, how do you encourage other people with sickle cell disease to tap into resources that support mental health and emotional well-being? You said something like, “I saw the statistics, and I put it aside and decided to live my life.” That was a mental action you did. How do you help other people with sickle cell disease see the statistics and the issues and then make a mental choice to set it aside and continue to move forward? How do you help other people listen to Dr [Wally] Smith when he says, “I have an 81-year-old and a 79-year-old,” and really see themselves in those people, instead of seeing yourself in somebody who’s 40 who dies early? How do you help your clients with that?
Cassandra Trimnell: That’s a great question. You hit it there: sharing. Sharing and talking with other people helped me immensely. In fact, the inception of Sickle Cell 101 was when I was a biology student looking to learn more about sickle cell disease. I was born and raised in Iowa. As you can imagine, there weren’t too many people living with sickle cell disease there. It was my little sister and me. I made it to [Sonoma State University in] California, where I decided to become a biology major. I got the 2-minute spiel on sickle cell disease in biology and felt shortchanged and started doing my own research. At the time, Instagram was a big, popular platform. I found that there was a community on social media and Instagram. As I was teaching myself about sickle cell disease, I realized that if I don’t know, how many other people don’t know?
We started disseminating educational material that way. In doing so, we found this huge community of people. It felt a little less isolating. It’s really finding your tribe and having your tribe. Your tribe should consist of people also living with sickle cell disease. My mom is a health freak. Growing up, she would always say, “You’ve got to eat properly. You’ve got to eat your vegetables, eat your fruit, and drink water.” She was just always telling me to eat healthfully, and it would go in 1 ear and out the other. I went on YouTube 1 day and saw someone else living with sickle cell disease. He was on a raw smoothie diet. He was putting in fruits and vegetables and making it look great. It clicked for me there. I was like, “I need to eat healthfully.”
My mom spendt my entire life telling me to eat healthfully, but it was a guy on YouTube who I didn’t even know. I hadn’t even met him. I eventually got to meet him, but that was what resonated with me. It’s a must to have people in your circle who live with sickle cell disease because it’s important to feel understood. Also, some of my closest friends are health care providers. I have a pharmacist on deck. I swear, every person with sickle cell should have a friend who’s a hematologist, a pharmacist, and a nutritionist. That’s my tribe, and I realize I’m very lucky. At the very least, it’s having and building a relationship with your health care provider. There’s a shortage of adult hematologists, but to me, if a health care provider cares enough, you’ll get the right care. All you need is a health care provider who cares about your well-being and cares about how to make your pain better.
What I advocate for is having that relationship with a health care provider and having a relationship with other people within the sickle cell community who are living with sickle cell disease. My mom needs people around her who are other mothers raising children with sickle cell disease. You need to feel validated, because once you receive that validation, you know you’re not alone, and you might even find ways on how you can better deal with it and teach yourself. That’s the power of social media in this digital age. Luckily, it doesn’t have to be in person. You can reach out to whomever on social media or by email or phone. Make sure you’re keeping in touch with your sickle cell tribe, so you’re staying on top of your mental health and always advocating for yourself and teaching yourself how to navigate this disease.
Ifeyinwa Osunkwo, MD, MPH: Thank you so much, Cassandra. I love how you mentioned to find your tribe. When people go to college, they either rush to a sorority or find a group of people they belong to. It’s kind of like that, right? You have your sorority sisters or fraternity brothers. You have your dorm friends. You have people you study with—never the sorority people, you have to keep those 2 separate.
Cassandra Trimnell: Absolutely.
Ifeyinwa Osunkwo, MD, MPH: It’s about having people who have sickle cell in your tribe, right? And people who don’t, people who know more than you, and people you know more than. You can help each other out. That’s a wonderful concept to pass along. I like how you said your mom needs mothers of people with sickle cell to help support her. It takes an entire village of people to walk this walk.
Cassandra Trimnell: It does.
Ifeyinwa Osunkwo, MD, MPH: Thanks so much for that comment.
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Transcript Edited for Clarity