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Emergency management in sickle cell diseasePeople with sickle cell disease need to be well prepared and know how to react in a medical emergency. What to do? Where can I get help? How can I prepare for such a situation?

Emergency cards can save lives

In pain crises and other acute emergencies, every minute counts. So it makes sense to carry an emergency card for sickle cell disease that summarizes the key facts and helps ensure that you receive the right treatment quickly in an emergency. The emergency card helps medical staff identify which typical sickle cell emergency you have. In a pain crisis, it can help ensure that you get the right treatment as quickly as possible – as recommended by the experts. You can download your emergency card here.
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Emergency? Call 112!

112 is the European emergency number you can dial free of charge in any European country – even without prepaid credit on your cell phone.
You will be led through the following steps during the call:
•    State your name
•    What happened?
•    Where did it happen?
•    Stay on the line and wait for further instructions.
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How do I know it’s an emergency?
Serious and potentially life-threatening complications can occur in sickle cell disease. Go to the hospital immediately if the following symptoms occur, or call emergency services on 112.1
  • Fever (body temperature above 38.5 degrees Celsius)
  • Breathing problems
  • Chest pain
  • Abdominal (belly) swelling
  • Severe headache
  • Sudden weakness
  • Seizure
  • Painful erection of the penis that lasts a long time (priapism)
What causes emergencies?
  • Vascular occlusion is a key feature of sickle cell disease.2 It happens when sickle cells block blood flow and tissues do not get enough oxygen and nutrients. Depending on the affected organ, this can cause:2
    • A sudden pain crisis (arms, legs, head, thyroid cartilage, backbone and chest)
    • Acute chest syndrome (lungs)
    • Stroke
    • Painful erection of the penis that lasts a long time (priapism)
    • Paralytic ileus (waste matter stops flowing through the bowels)
    • Enlargement of the spleen (splenic sequestration, especially in small children)
    • Hand-foot syndrome (swollen hands and feet in small children)
  • Acute shortage of red blood cells (anemia): The continuous anemia caused by the shortage of red blood cells in SCD can suddenly get worse due to certain complications.3 Signs of such an emergency include:4
    • Fever, chills
    • Headache, abdominal (belly) pain, back pain
  • Weakened immune system (due to damage to the spleen):3
    • Severe infections, especially with bacteria
  • Serious health problems due to sickle cell disease
    • Organ damage (including the liver, lungs, spleen, kidneys, heart and eyes)3,5
    • Leg ulcers2
What if an emergency department visit is necessary?
  • Organize help: Perhaps a family member, friend or neighbor can drive you to the hospital right away. Otherwise, call emergency services on 112.
  • Take important medical documents with you, such as your completed emergency card, medication lists, etc.
  • Only take the essentials with you: Personal identification documents (passport, identity card, permission to stay, residence permit), health insurance information, cell phone, charger, cash or credit card, prepared emergency bag with a change of clothes for the first few days (in case of hospitalization).
  • On arrival: Tell reception staff immediately that you have sickle cell disease and show your emergency card.
  • Follow-up care – if inpatient admission to the hospital is not necessary following treatment in the emergency department: Make sure you understand all the instructions about follow-up care. If something is unclear, don't be afraid to ask questions until you are sure you understand everything. It’s about your health, after all!
How do I prepare for an emergency?Being well prepared for a medical emergency can make all the difference. It helps to avoid stress and confusion.
  • Keep a list with important phone numbers easily accessible or clearly visible and also store it in your cell phone:
    • Emergency contacts with telephone number, including family members, friends, and neighbors (who can look after the kids?)
    • Contact details of doctors and hospital department
    • Contact details of your children's daycare center or school 
    • Contact details of your employer
  • Health insurance: Always have your health insurance card handy, for example in your wallet.
  • Always carry a completed emergency card with you, ideally together with your health insurance card.
  • Electronic patient record (in German: elektronische Patientenakte, ePA): Health insurers provide an app to store your electronic patient record on your phone. It contains test results, documents, medical reports and other personal health records. All this important data is just a few clicks away. Find out more from your health insurer.
  • Sort out childcare: Make childcare arrangements in advance. Have somebody ready and willing to pick up the kids from daycare or school and mind them while you are in the hospital.
  • Cell phone: Keep your phone charged so that you can get help and call 112.
  • Medication: Always have a sufficient supply of SCD painkillers and prescription medicines.
  • Tell your family: Tell close family members or roommates where they can access important medical information and key contacts in an emergency.
  • Tell daycare and school staff: Talking to daycare staff and teachers about your child's sickle cell disease can be beneficial. Knowing about it enables them to support your child with SCD, recognize the signs and call 112 right away if necessary.
  • Pack a bag: Pack a bag with clothes and toiletries for the first few days in case you are admitted to hospital.
Recognizing an enlarged spleenEnlarged spleen (splenic sequestration) is a common emergency in babies and young children.6 Call 112 right away! Parents need to learn to recognize an enlarged spleen in their child with sickle cell disease.5,6 The doctors teach this.7 If you are unsure or need to refresh your knowledge, don’t be afraid to ask the doctors.
ReferencesNational Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders. Living Well With Sickle Cell Disease Self-Care Toolkit.; last accessed: September 2023; last accessed: September 2023Inati-Khoriaty A. Sickle Cell Disease. A Guide for Parents, Patients and the General Public. Published by Thalassaemia International Federation, Publication Number 15, 2008.; letzter Aufruf: September 2023; last accessed: September 2023 Society for Pediatric Oncology and Hematology. AWMF S2k guideline 025/016 "Sickle cell disease". 2nd Edition, 02 Jul 2020.; last accessed: September 2023; last accessed: September 2023 Federal Joint Committee: Method evaluation. Newborn screening now includes sickle cell disease. Press release no. 60 / 2020.; last accessed: September 2023
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