Resources and Organizations



These are just a few websites where you may find additional information about the latest treatment options and how you can 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

American Society of Hematology – Sickle Cell Disease Initiative  
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. 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.


Talk to your physician about how you can best manage your sickle cell disease.
Download the questions
Return to Sickle Cell Disease Basics Page

Transfusion-Releated Safety Information  

Side effects of automated 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.18

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.19,20
Restricted to prescription use only.
  • Operators must be familiar with the system’s operating instructions.
  • Procedures must be performed by qualified medical personnel.

1World 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.
2American Society of Hematology. Understanding the Impact of Sickle Cell Disease. https://www.hematology.org/education/patients/anemia/sickle-cell-disease. Accessed November 5, 2020.
3Danielson 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.
4Centers 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.
5Tsitsikas 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.
6Dedeken L, Le PQ, Rozen L, et al. Automated red blood cell exchange compared to manual exchange transfusion for children with sickle cell disease is cost-effective and reduces iron overload. Transfusion. 2018;58(6):1356-1362.
7Kuo K, Ward R, Kaya B, Howard J, Telfer P. A comparison of chronic manual and automated red blood cell exchange transfusion in sickle cell disease patients. Br J Haematol. 2015;170(3):425-428.
8National Institute for Health and Care Excellence (NICE). Spectra Optia for automatic red blood cell exchange in patients with sickle cell disease. https://www.nice.org.uk/guidance/mtg28/chapter/5-Cost-considerations. Accessed November 2020.
9Singer T, Quirolo K, Nishi K, Hackney-Stephens E, Evans C, Vichinsky E. Erythrocytapheresis for chronically transfused children with sickle cell disease: an effective method for maintaining a low HbS level and reducing iron overload. J Clin Apher. 1999;14(3):122-125.
10Duclos C, Merlin E, Paillard C, et al. Long-term red blood cell exchange in children with sickle cell disease: manual or automatic? Transfus Apher Sci. 2013;48(2):219-222.
11Howard J. The role of blood transfusion in sickle cell disease. ISBT Science Series. 2013;8:225-228.
12Barth D, Sanchez A, Thomsen A, et al. Peripheral vascular access for therapeutic plasma exchange: a practical approach to increased utilization and selecting the most appropriate vascular access. J Clin Apher. 2020;35(3):178-187.
13Adams DM, Schultz WH, Ware RE, Kinney TR. Erythrocytapheresis can reduce iron overload and prevent the need for chelation therapy in chronically transfused pediatric patients. J Pediatr Hematol Oncol. 1996;18(1):46-50.
14Fasano RM, Leong T, Kaushal M, Sagiv E, Luban NL, Meier ER. Effectiveness of red blood cell exchange, partial manual exchange, and simple transfusion concurrently with iron chelation therapy in reducing iron overload in chronically transfused sickle cell anemia patients. Transfusion. 2016;56(7):1707-1715.
15Al-Salem AH. Medical and Surgical Complications of Sickle Cell Anemia. Springer; 2016.
16Cobianchi C, Fafoutis D, Roig J, Dierick K, Comasolivas N. Measuring health-related quality of life in individuals with sickle cell disease undergoing automated red blood cell exchange. Poster presented at: Sickle Cell Disease Association of America Annual Meeting: October 2018; Baltimore, MD.
17Barth D, Nemec RM, Cho DD, et al. The practical integration of a hybrid model of ultrasound-guided peripheral venous access in a large apheresis center. J Clin Apher. 2020; 35(4):328-334.
18Crookston KP. Therapeutic Apheresis: a Physician’s Handbook. 5th ed. Bethesda, MD: AABB/ASFA; 2017.
19AABB. Circular of Information for the Use of Human Blood and Blood Components. Bethesda, MD: AABB; 2017.
20European 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.