If you have sickle cell disease (SCD), you may need one or more blood transfusions (healthy blood from a donor put into your body) during your lifetime. During a blood transfusion, your blood and the donated blood must have matching antigens, or special proteins on the surface of each red blood cell. If the antigens in your blood and the donated blood do not match, your immune system (your body’s ability to fight germs) may attack the new blood. This transfusion reaction can cause serious health problems. Below are steps you can take for safer blood transfusions.   Abstract source

People with sickle cell disease (SCD) are often prescribed medicines for common complications of SCD. If your provider prescribes you medicine, take the following steps: Ask your provider about the benefits and risks of your medicine Although medicines can have lifesaving benefits, they sometimes come with risks. It’s important to learn about both before you start taking your medicine. Take your medicine exactly as prescribed It is important to take the right amount, at the right time, and in the right way. Not doing so can seriously affect your health. Talk to your provider if, for any reason, you are having trouble following your treatment plan.   Abstract source

People with sickle cell disease (SCD) are at greater risk than the general population for kidney complications. Share your medical history with your healthcare team so it can properly identify and treat any complications of SCD you currently have or may develop. Your healthcare team may include your primary care provider, SCD provider, and any other healthcare specialists. Below are common kidney complications and steps you can take for better kidney health. Albuminuria (Too Much Protein in the Urine) People with SCD often have albuminuria, or too much protein in the urine (possibly an early sign of kidney disease). Remind your provider to check your urine every year. A simple urine test done every year will help your provider monitor the amount of protein in your urine. Your provider may prescribe medicines that lower the amount of protein in your urine to help protect your kidneys.   Abstract source

People with sickle cell disease (SCD) are at greater risk than the general population for lung problems. Lung problems can cause breathing-related difficulties and disorders and sleep-related disorders. Share your medical history with your healthcare team so it can properly identify and treat any complications of SCD you have or may develop. Your healthcare team may include your primary care provider, SCD provider, and any other healthcare specialists. Below is one step you can take towards better lung health.   Abstract source

People with sickle cell disease (SCD) are at greater risk than the general population for forming blood clots. A blood clot in one of the large veins, usually in a person’s leg or arm, is called a deep vein thrombosis (DVT). If a DVT is not treated, it can get bigger or break off and travel to the lungs. A blood clot in the lung is called pulmonary embolism (PE) and can cause death. Call your provider as soon as possible if you experience any of the DVT symptoms listed below: • Swelling of your leg or arm • Pain or tenderness in your leg or arm not caused by an injury • Skin on your leg or arm that is warm to the touch, with swelling or pain • Redness of the skin on your leg or arm, with swelling or pain   Abstract source

People with sickle cell disease (SCD) are at greater risk than the general population for high blood pressure. High blood pressure often increases the workload of the heart and blood vessels, which can cause complications. Share your medical history with your healthcare team so it can properly identify and treat any complications of SCD you currently have or may develop. Your healthcare team may include your primary care provider, SCD provider, and any other healthcare specialists. Below are steps you can take for better heart health.   Abstract source

Nancy René's Looking at the NASEM Report Series We’re Almost Done I had been reading Chapter 7, Developing and Delivering the Next Generation of Therapies, when I came across one of the most important points in the whole dense publication. Here’s the quote, “Because traditional fee-for-service models of reimbursement provide little direct incentive for physicians to maximize quality or avoid wasteful spending, several recent reforms have attempted to strengthen physician incentives for quality and efficiency.” Wow. So far I haven’t seen any reforms aimed at the sickle cell population, and I think I understand why. The material in this chapter is difficult to understand, and when I attempt to understand difficult material I look to anecdotes and stories that might shed a light on the issue. I’ll use the AIDS epidemic as my anecdote. When we first became aware of AIDS, it seemed to affect those people, folks who were easily marginalized or dismissed. But then when Magic Johnson disclosed his AIDS status, things turned around. Something like that hasn’t happened for those with sickle cell. We remain on the fringes, not really able to take advantage of the therapies currently available because it is still OK for doctors to be uninformed or refuse to treat. With the gaps in healthcare exposed by coronavirus disease, people are beginning to take notice. Unfortunately, progress still seems to be moving at a snail’s pace. The Report ends with Chapter 9, Strategic Plan and Blueprint for Sickle Cell Disease Action. The actions seem like good steps, unfortunately I don’t see where those steps are identified in a way that might force various governmental agencies to act. I guess that’s where all of us have to get busy. The strategies and recommendations can be found on pages 401 to 415. oneSCDvoice includes patient advocates from all across the United States. Please read through the recommendations with your group and see what strategies might be possible for you. Eighteen years ago when I became an advocate for sickle cell disease, we thought that better understanding of the disease would help our loved ones who were struggling—and it has. But as time goes on, I realize that much more has to happen if we are to improve medical care and prolong life. So to all of my students, I hope you got something out of these missives. I implore you to continue the fight so that the next generation can finally overcome this disease and live longer, healthier lives. Take care. Nancy M. René Co-Founder, JVT Advocates Los Angeles, California, United States

SickleCellKids.org is a joint venture of the Georgia Comprehensive Sickle Cell Center at Grady health System and Cynthia Gentry. The Georgia Comprehensive Sickle Cell Center at Grady Health System is the world's first 24 hour comprehensive primary care clinic for patients with sickle cell syndrome. The mission of the center is to provide preventive comprehensive primary care to the sickle cell population in North West Georgia. Social media

Sickle Cell Disease is the most common blood disorder in the U.S. Hope & Destiny provides clear-cut and in-depth information for the more than 80,000 Americans living with sickle cell disease. Written especially for parents and caregivers, it offers the latest information on preventing complications, research, and treatment. The knowledge patients and family members need is organized in an easy-to-read format that promotes overall healthy living. Related content