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Living With Sickle Cell Disease

Review this educational resource covering essential information on sickle cell disease and transfusion therapy

Sickle cell disease facts

Approximately 300,000 babies are born with sickle cell disease each year, according to the World Health Organization (WHO).¹

In the U.S., sickle cell disease affects approximately 100,000 individuals.²

The number of people with sickle cell disease is expected to grow 30% globally by 2050.²

Only 20% of family physicians report feeling comfortable treating people with sickle cell disease.²

Sickle cell disease

Sickle cell disease is a group of inherited red blood cell disorders. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has sickle cell disease, the red blood cells become inflexible and sticky and look like a C-shaped farm tool called a "sickle." The sickled cells die early, which causes a constant shortage of red blood cells. Sickled cells can also get stuck when traveling through blood vessels and clog the blood flow. This can cause pain and other serious complications such as infection, acute chest syndrome, and stroke.

Sickle cell trait

People who inherit one sickle cell gene and one non-sickle gene have the sickle cell trait. People with the sickle cell trait usually do not have any of the symptoms of sickle cell disease, but they can pass the trait on to their children.³

Transfusion therapy for sickle cell disease

Transfusion therapy is generally defined as receiving blood via an intravenous (IV) line. By giving you healthy red blood cells or exchanging sickled red blood cells with healthy ones, transfusion can allow oxygen to flow more easily through your body to help improve symptoms and reduce complications of sickle cell disease.⁴

Transfusion therapy is a widely utilized treatment option for specific long-term and acute complications of sickle cell disease. It is generally a safe and effective therapy for managing the disease. However, there are multiple types of transfusion therapy to manage sickle cell disease.

Learn about the different types of transfusion therapy and how they may help you better manage your disease.⁵

Transfusion therapy is not the only option for treating sickle cell disease and may not be appropriate for all sickle cell disease patients. Scroll down the page for five questions you can ask when consulting your physician about whether transfusion therapy may be an option for you.

Video: 7 minutes

View now: Rona Wiggins is living her best life despite sickle cell disease

 

"I really didn't find anything that was effective for keeping me away from having crises except for automated red cell exchange. Now I'm living well with sickle cell."

Rona Wiggins

Sickle cell patient

Top five questions to ask your physician

Be prepared, be engaged, and take control: Take this list of questions to your next doctor’s appointment to help lead the conversation about your sickle cell disease treatment options.

  1. Is transfusion therapy an option for me? And if so, which type of therapy (manual, simple, automated) will best manage my sickle cell disease?
  2. If transfusion therapy is not an option, what treatment alternatives are available that could help me better manage my sickle cell disease?
  3. What are the safety concerns with the different transfusion therapy options?
  4. What can I do now to prevent future sickle cell disease-related health problems?
  5. What other resources are available to help me learn more about sickle cell disease and my treatment options?

Save the list of questions to ask your physician

Download the questions

Resources and organizations

Here are a few websites where you may find additional information about the latest treatment options and how you may be able to positively impact your quality of life while living with sickle cell disease.

North America

Sickle Cell Disease Association of America

Sickle Cell Disease Coalition

Sick Cells

Europe, Middle East, Africa

Global Sickle Cell Disease Network

Sickle Cell Information Center 

Sickle Cell Anemia News

Sickle Cell Society  

 

Latin America

Sickle Cell 101

The Sickle Cell Anemia Association of the State of São Paulo

Use apps to your advantage

A multitude of apps can help you keep track of your overall health while living with sickle cell disease. Search your mobile app store or the internet for apps that help track the following:

Water intake 
Staying hydrated is important to staying healthy and managing your sickle cell disease. These handy apps help you track your daily water intake. Some also allow you to set reminders to drink water throughout the day.

Symptoms 
How were you feeling last week? Or the week before that? Plug in any symptoms and the treatments used to address them on any given day. This can help you pinpoint what may cause a flare-up, which treatments work for you, and a more comprehensive picture to share with your physician on your next visit.

Mindfulness and stress 
Dealing with a chronic disease is stressful. These apps can help you manage stress by playing calming music, helping you fall asleep, or guiding you through breathing exercises and meditation.

Side effects of automated red blood cell exchange (RBCX) may include: 
Anxiety, headache, light-headedness, digital and/or facial paresthesia (tingling sensation in the arms, hands, feet, legs, or face), fever, chills, hematoma, hyperventilation, nausea and vomiting, syncope (fainting), urticaria (hives), hypotension, allergic reactions, infection, hemolysis, thrombosis in patient and device, hypocalcemia, hypokalemia, thrombocytopenia, hypoalbuminemia, anemia, coagulopathy, fatigue, hypomagnesemia, hypogammaglobulinemia, adverse tissue reaction, device failure/disposable set failure, air embolism, blood loss/anemia, electrical shock, fluid imbalance and inadequate separation of blood components.⁶
 
Contraindications 
Automated RBCX may not be an option for all patients with sickle cell disease. Talk to your physician about your transfusion options. Contraindications for the use of apheresis systems are limited to those associated with the infusion of solutions and replacement fluids as required by the apheresis procedure and those associated with all types of automated apheresis systems. 
 
Reactions to blood products transfused during procedures can include: 
Hemolytic transfusion reaction, immune-mediated platelet destruction, fever, allergic reactions, anaphylaxis, transfusion-related acute lung injury (TRALI), alloimmunization, posttransfusion purpura (PTP), transfusion-associated graft-versus-host disease (TA-GVHD), circulatory overload, hypothermia, metabolic complications, and transmission of infectious diseases and bacteria.⁷˒⁸

Restricted to prescription use only. 
Operators must be familiar with the system’s operating instructions.
Procedures must be performed by qualified medical personnel.

Disclaimers and notes

  1. World Health Organization (WHO). Fifty-ninth world health assembly. Sickle-cell anaemia: report by the Secretariat. https://who.int. Published April 24, 2006. Accessed June 1, 2020.

  2. American Society of Hematology. Understanding the Impact of Sickle Cell Disease. https://www.hematology.org/education/patients/anemia/sickle-cell-disease. Accessed November 5, 2020.


  3. Centers for Disease Control and Prevention. Sickle Cell Disease. Data & Statistics on Sickle Cell Disease. https://www.cdc.gov/ncbddd/sicklecell/data.html#:~:text=SCD%20affects%20approximately%20100%2C000%20Americans,sickle%20cell%20trait%20(SCT). Accessed June 1, 2020.
  4. Tsitsikas DA, Sirigireddy B, Nzouakou R, et al. Safety, tolerability, and outcomes of regular automated red cell exchange transfusion in the management of sickle cell disease. J Clin Apher. 2016;31(6):545-550.
  5. Danielson CF. The role of red blood cell exchange transfusion in the treatment and prevention of complications of sickle cell disease. Ther Apher. 2002;6(1):24-31.
  6. Crookston KP. Therapeutic Apheresis: a Physician’s Handbook. 5th ed. Bethesda, MD: AABB/ASFA; 2017.
  7. AABB. Circular of Information for the Use of Human Blood and Blood Components. Bethesda, MD: AABB; 2017.
8. European Directorate for the Quality of Medicines & HealthCare (EDQM). Guide to the Preparation, Use and Quality Assurance of Blood Components. 20th ed. Strasbourg, France: EDQM Council of Europe; 2020.
  8. European Directorate for the Quality of Medicines & HealthCare (EDQM). Guide to the Preparation, Use and Quality Assurance of Blood Components. 20th ed. Strasbourg, France: EDQM Council of Europe; 2020.
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