Welcome to CMO Speaks, a blog featuring the voices of SCDAA’s clinical leadership team. This article was written by Dr. Lewis Hsu, SCDAA’s chief medical officer. The Emergency Department is no one’s favorite place, but unfortunately individuals with sickle cell disease may pay it frequent visits for emergency care. Encountering problems in ED care is distressingly common. During the SCDAA Annual National Convention in October 2023, SCDAA participated in a joint session with the Emergency Department Sickle Cell Care Coalition (EDSC3) entitled “Summit on Emergency Department Sickle Cell Care.” The special morning session, Frameworks to Improve the Emergency Department Experience for Sickle Cell Disease, focused on existing guidelines and efforts related to dissemination and education of emergency medicine clinicians. The keynote speaker for this morning session was Dr. Aisha Terry, president of the American College of Emergency Physicians. Videos expressing the views of people living with sickle cell disease and those that care for them give further insight into the current state of care delivered in the emergency department. Other speakers included:

• Dr. Henry Young: Point-of-Care Tool to guide management of SCD
• Dr. Paula Tanabe: Statewide standardization of care processes, the North Carolina experience
• Dr. David Brousseau: Implementation through a research network, the PECARN experience
• Yvonne Carroll: IASCNAPA sickle cell disease bootcamp for nurses

Major Takeaways on ED Care from the Convention

1. Dr. Paula Tanabe made presentations that included implementation tips for Individualized Pain Plans (IPP) to help ED doctors and nurses to see that the IPP can help speed up their workflow. She suggested that providers put the IPP in the health record where a Patient Portal can access it. One individual reportedly showed their IPP to a new ED when traveling out of state, and that ED acted upon the IPP as credible information.
2. SCDAA is partnering with MedicAlert to store IPPs online and provide patients with a bracelet/wallet card with a QR code that links to their information. We hope that the MedicAlert imprint will make the IPP credible.
3. The ACEP Point-of-Care Tool for sickle cell (website and mobile app) built into their algorithm for sickle cell acute management that dosing of pain meds should be guided by IPP as first choice, weight-based dosing as second choice.
4. A new calculator for sickle cell experts to create IPP dosing in the ED based upon the individual’s chronic opioid intake was created by Dr. Paula Tanabe and Dr. Patricia Kavanagh. The tool was validated in a clinical trial COMPARE-VOE. The Excel calculator and instructions are posted for health care providers to use at the National Alliance of Sickle Cell Centers website.

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When you live with sickle cell disease (SCD), it is important to drink plenty of water and other fluids. This helps you to stay hydrated. If you become dehydrated, your sickle cell symptoms may become worse. People with sickle cell disease have a problem with their red blood cells. Their red blood cells contain an abnormal type of hemoglobin. Hemoglobin is the substance in the blood that carries oxygen from the lungs to other areas of the body. Instead of being round like normal red blood cells, their red blood cells look like a C-shaped farm tool called a “sickle.” These abnormal cells can have trouble getting through small blood vessels. They can get hard and sticky. Also, there is a constant shortage of red blood cells in someone with sickle cell disease.   When the abnormal blood cells block small blood vessels in the body, less blood reaches that part of the body. Eventually, these parts of the body can become damaged. What happens when you become dehydrated? When you use or lose more fluids than you take in, you become dehydrated. This means your body does not have enough water and other fluids to carry out normal functions. Just because you are not thirsty does not mean you are drinking enough water. Many people, especially older adults, do not feel thirsty until they are already dehydrated. Signs of dehydration often differ by age. In children, symptoms of dehydration may include dry mouth and tongue, no tears when crying, and no wet diapers for 3 hours. In adults, signs may include extreme thirst, dark-colored urine, fatigue, and dizziness.   Dehydration is especially worrisome in people with SCD. When you have SCD and you are not well hydrated, your red blood cells can clump together. This can cause a condition called sickle cell crisis. During a sickle cell crisis, you can experience pain. The pain is mostly in the bones of the spine, arms, and legs. Sickle cell crises can last from hours to days. You need medical treatment when you are having a sickle cell crisis. Staying hydrated can help prevent a sickle cell crisis. Abstract source

When I was younger and didn’t have a full understanding of sickle cell, my parents made sure I was aware of the things I had to do to ensure I was as healthy as possible. For example, I knew I had to take my medicine every morning, wrap up and keep warm, and drink a lot of water. Drinking 2 liters of water a day as a 6- or 7-year-old in primary school was a serious challenge, but my parents made it easier by doing the following. Related story

In Winnipeg, Halloween can be cold. Sometimes it even snows! Dressing up in a costume is part of the fun but you won’t be having much fun if you feel cold. If you are going to be out walking around this Halloween it is important you stay warm:

• If you want to be show off your costume and stay warm, wear your costume on top of other warm layers. You might be able to fit two pairs of pants, two shirts, or even a jacket and ski pants. The more layers, the better!
• If you can’t fit any extra layers under your costume, just put them over top. It is most important that you stay warm. If someone wants to see your costume you can show them!
• You may also want to wear warm hat, mittens and a scarf.
• If you still feel cold, go home and warm up inside before heading back out. Take as many breaks as you need!

Stay warm out there while trick-or-treating and have fun!! Abstract source Full text

Halloween is a time for spooky thrills and imagination. But the holiday also brings some extra risks for children and teens. Did you know that child pedestrian injuries are more likely on Halloween than on any other night of the year, for example? Help keep Halloween fun and safe for your family with these tips. Abstract source

Social Media As A Tool for CBO Community Engagement The Sickle Cell Consortium is excited to present the Social Media Webinar series as part of Warrior University.  Warrior University is an online webinar curriculum series that will focus on patient and provider education, advocacy training, Consortium Speakers Bureau sign-up and certification, and best practices for sickle cell community-based organizations (to include grant writing, social media education and digital literacy, event planning, etc.). This Social Media Webinar series was developed to increase digital literacy and social media competence among CBOs.  Together with Pfizer and Online Media Interactive, we will provide the foundation for strong digital patient engagement through Social Media 100 and 102. We will then explore the potential for digital and social media engagement in the sickle cell community with Social Media 201 and 202. Abstract source

https://youtu.be/atWazeLHb8E?

Postpartum care is health care you get after you deliver. There are a lot of things to consider as you take care of your newborn, but don’t forget to take care of yourself, too. Postpartum care is important to help you stay healthy physically, emotionally, and mentally as you recover and bond with your baby. Learn what steps you can take to have a healthy recovery. Abstract source

Prenatal care is health care you get while you are pregnant. Regular prenatal care is important for everyone. It is especially important for women with sickle cell disease (SCD) because they are at greater risk for developing complications (health problems) during pregnancy than women without SCD. Pain crises and other SCD complications can become more severe or increase in frequency while you are pregnant, but regular care can help you manage and prevent complications. Learn what steps you can take to help stay healthy throughout your pregnancy Abstract source

As a Black woman living with mental illness, I’ve been told plenty of times by other Black people that I should not talk about my experience managing my mental health condition. That sentiment is always frustrating and discouraging to hear. The pervasive stigma surrounding mental illness in the Black community often makes me feel like my life is embarrassing and that I must hide a major part of myself. Sometimes, this shame can be too much to bear. But it also led me to wonder: How widespread is mental illness itself in the Black community? I figured that understanding the statistics would make it easier to erase the stigma. I did some research, and as it turns out, I am certainly not the only Black person experiencing mental illness. Among the nearly 5 million Black people living with a mental illness, nearly a quarter reported having a serious condition, including schizophrenia, bipolar disorder and depression, among many others. Despite that sizeable number, only 1 out of every 3 seek suitable treatment, which could include meeting with a mental health professional, such as a social worker, therapist or psychiatrist. While there are many factors contributing to the discrepancy between prevalence and people seeking adequate treatment — ranging from the prevalence of misdiagnosis to the lack of access to adequate medical care — stigma in the Black community still remains an insidious culprit. The Black community, and truly all communities, can engage in four activities to help get rid of stigma around mental illness. 1) Gather Information Stigma stems from a lack of knowledge, and the best way to fight a gap in information is by educating others in our community. There are numerous public resources on the different types of mental illnesses. Personally, I turned to resources on websites for the Depression and Bipolar Support Alliance, National Alliance on Mental Illness and Mental Health America. These were helpful places to start because they provided me with basic information and helped me recognize the negative preconceived notions I had about mental illness. They also directed me to places where I could learn even more. I also sought advice on what to read from the mental health professionals in my life, which I suggest everyone do as well. I read so many books and articles that, eventually, I had the language I needed to speak about my mental illness. 2) Speak Up I have noticed that, in our community, we often equate strength with being silent and stoic — and that speaking up and asking for help is weakness. I believe the opposite is true. That’s why I have chosen to be open with my family and friends about living with a mental illness — and I emphasize the fact that I have won prestigious fellowships, scholarships and awards in spite of it all. I’ve also written about seeking help after experiencing a traumatic event. Living with a mental illness doesn’t define anyone, nor does it limit anyone’s abilities. Showcasing our best selves — with mental health issues and all — reveals to some that we are just as capable as anyone else when it comes to leading a successful life. 3) Remain Open As more Black people open up about living with a mental illness, the closer we will get to dismantling the stigma in our community. There is genuine comradery found in knowing that I am not the only Black person living with a mental illness. Celebrities like Taraji P. Henson, Jenifer Lewis and Janet Jackson, among many others, have opened up about their experiences with mental illnesses ranging from depression to bipolar disorder. Henson even founded The Boris Lawrence Henson Foundation in 2018 in memory of her late father. The more we recognize that mental illness can affect anyone, from your next-door neighbor to your personal hero, the more real and less frightening mental illness becomes to our community. 4) Believe People Believing people when they say they have a mental illness is vital to eradicating stigma. When someone has a mental health crisis or expresses emotional distress, telling them to simply “pray it away” or to “fix your attitude” isn’t helpful. Failing to consider that people do, in fact, live with mental illness — and being dismissive in our advice — dissuades people from coming forward with how they are truly feeling. This sometimes causes people to not seek appropriate medical help. These suggestions are just first steps when it comes to overcoming mental health stigma in the Black community. We must do better and be better when it comes to supporting other Black people living with mental illnesses, myself included. I hope my thoughts push discussions further and foster a more productive and positive dialogue. While not everyone in the Black community has a diagnosis, it’s important to keep in mind that mental illness can affect anyone, including our community.   Brakeyshia R. Samms is a writer who lives with a mental illness and works as a policy analyst. She has previously published essays in The Huffington Post, The Dallas Morning News, The Austin American-Statesman and Invisible Illness. All opinions expressed here do not reflect the views of her affiliations.       Related content