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Living with sickle cell disease – every day of your life

Sickle cell disease is a chronic condition, meaning you have it for life.1 Learning that a person has SCD is life-changing for the patient and their family members. After the initial shock, you will have a lot of questions that need answers.

Living with sickle cell disease is challenging. But by taking care of your health, getting support and owning your illness, you can still lead a fulfilling life.

Stick to your treatment

Sickle cell disease is progressive,2 meaning the impacts of the disease may worsen over time. But effective treatment can help delay serious damage to your health. That's why it's crucial to stick to the treatment plan developed together with your doctors. Following it closely can make the therapy work best to ease symptoms and lower the risk of complications.

  • Taking your medication regularly – even when life gets hectic – is key. Only then can we successfully relieve the symptoms and reduce the risk of complications. Taking your medication at the same time every day helps. There are smartphone apps that can remind you to take your meds.
     
  • Attend medical appointments: Regular appointments with your doctor are necessary to monitor your health. Ideally, treatment should be shared by a specialized team working closely together with a pediatrician or family doctor.3 It’s important to keep track and show up for all your medical appointments so that you get all the tests recommended in expert guidelines at the scheduled intervals.2,4

5 Tips to prepare for your doctor’s appointment

  • Make a note of your questions in advance
  • Discuss everything openly
  • If there’s anything you don’t understand, ask!
  • Write down important information
  • Keep asking until everything is clear
5 Tipps für das Arztgespräch
  • Fragen vorher notieren
  • Alles offen besprechen
  • Nachfragen, wenn etwas unverständlich ist
  • Wichtige Informationen aufschreiben
  • Dranbleiben, bis alles klar und verständlich ist
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Become an expert in your own illness:
  • What does sickle cell disease mean and how will it affect my life? Being well informed gives you a clear advantage. Understanding your/your family member’s illness and learning healthy habits is key to living well with SCD. When you have a rare disease like SCD, it’s good to be able to describe it exactly to nurses and doctors and tell them what you need.
     
  • Spread the word: Telling friends, neighbors, childcare staff and teachers about sickle cell disease can be beneficial. Knowing about the disease helps people understand its effects. This prevents misunderstandings and allows them to be helpful in an emergency. Like knowing to get help right away if a pain crisis occurs.
     
  • Emergency management – make a plan! Know exactly what to do in a crisis. Where is immediate medical assistance available (addresses, phone numbers)? Who needs to be told if there’s a medical emergency such as an acute pain crisis (daycare, school, employer, etc.)? Who can help with childcare? What paperwork do you need if you/your child needs to be hospitalized? Having a step-by-step plan in an obvious place means less stress for everyone involved.
Tip: Treat pain immediately. Always have painkillers with you. Keep a spare supply of medication at the homes of friends and family members.
  • Learn to manage your triggers: Certain factors can bring on symptoms such as an acute pain crisis. Develop your own personal strategy to deal with your triggers:
    • Stay hydrated: Remember to drink regularly. Water is best. Tip: prepare water bottles in the morning to keep you supplied all day. Drink plenty of water when exercising, in hot weather and when traveling by plane.2
    • Stress: Some stress can be avoided by planning ahead. You can help manage stress with relaxation techniques like autogenic training, breathing exercises, progressive muscle relaxation or yoga. Try asking your health insurance provider about courses in your area or online.
    • Cold weather: Stay warm – dress appropriately for the weather. Don’t stay out too long on very cold winter days. Do not swim in cold water. Wrap up well after swimming.2
    • High altitudes: Avoid high altitudes (over 2000 m).2
       
  • Healthy lifestyle: A balanced diet, regular exercise and getting enough sleep can help strengthen the immune system. Having a strong immune system is very important for people with sickle disease.
    Tip: Find out more about healthy eating here.
     
  • Fatigue: Feeling tired or exhausted all the time is common in sickle cell disease.5,6 Here are some ways to help manage fatigue:
    • Talk to your doctor: there may be ways to treat what is causing the fatigue (anemia, for instance).
    • Accept help – when things get too much. It's OK to ask for support.
    • Plan ahead, set boundaries: Planning ahead can help prevent feeling overwhelmed. Self-care is important. Pay attention to your own needs. Don't be afraid to say no.
       
  • Emotional support: Like any other chronic illness, sickle cell disease can be difficult to deal with emotionally. Taking care of your mental health and getting professional support when necessary is just as important as your physical health.
Symptom diary

You can use a symptom diary to keep track of symptoms and any abnormalities – even if they don’t seem to have anything to do with  sickle cell disease. Keeping a diary is a useful way to monitor your health and take control of the disorder. Showing the diary to the doctor at your next appointment is a much more effective way of describing your symptoms than from memory alone and gives the doctor important information about your current health.

  • Monitoring symptoms: The diary shows which symptoms occurred, when they occurred and how severe they were.
     
  • Recognizing patterns or triggers: Certain activities, weather conditions or stress can make the symptoms worse. If you know this, you can avoid these triggers or try to handle them better.
     
  • Tracking treatment response: The diary helps doctors judge the patient’s response to medication or other measures and see whether treatment needs to be adjusted for better symptom control.
     
  • Long-term outcome: Diary entries going back a long period of time can indicate trends in the illness and enable you to take action together with your doctors.

What should I write down? Sickle cell disease is different for everyone, so your diary entries will not be like another person’s. In addition to the date and maybe also the time of day, details might include: pain duration, pain intensity (on a scale from 1 to 10), where the pain occurs, what it feels like, accompanying symptoms, cycle, medication and other influences such as stress, activities, weather changes, and so on.

Tip: Download a symptom diary app – find one by entering “symptom diary” in the App Store/Google Playstore.Es gibt auch Symptom-Tagebücher in Form von Apps – dazu einfach mal das Stichwort „Symptomtagebuch“ im App-Store/Google-Playstore eingeben.Learning from other patients

It can be enormously helpful and beneficial to see how other patients with sickle cell disease cope with the challenges of everyday life. Six patient videos on a range of topics are provided below: having kids, pregnancy, studying, becoming a doctor, post-traumatic stress disorder (PTSD) due to pain crises, discrimination in hospital, and helping others with the same illness as you.

Student life with SCD (Video is only available in German.)

Anita shares how she copes with SCD in her everyday life as a student and how she overcomes the challenges involved.

SCD and trauma (Video is only available in German.)

Jennifer developed post-traumatic stress disorder as a result of multiple pain crises. In this video, she talks about how she dealt with her trauma and what helped her to overcome it.

SCD and activism (Video is only available in German.)

Ipek talks about her SCD journey and how she is helping others deal with SCD through her involvement in IST e.V., a patient organization.

SCD and having kids (Video is only available in German.)

Dorine talks about her life with sickle cell disease as a mother of two and the challenges she faced during pregnancy and childbirth.

SCD and writing (Video is only available in German.)

Julien gives insight into his life with sickle cell disease. He has decided to share his experiences in a blog to encourage other people who are affected and to help relatives and doctors understand the disease better.

Becoming a doctor with SCD (Video is only available in German.)

Olivier is a sickle cell patient and a pediatrician. He gives an account of how he deals with the disease day to day and what inspired him to become a pediatrician – despite or perhaps because of his illness.

Patients' day for people with sickle cell disease and their relatives.Patients' day for people with sickle cell disease and their relatives
The first patients' day for people with sickle cell disease and their relatives was held on 28/10/2023 in Essen – a cooperative event hosted by Pfizer and Essen University Hospital. The event gave participants the opportunity to exchange information about sickle cell disease, ask questions and to network with each other.

Here are the results of the two sessions on the topic "Emergency management" and "Prescription, and then?" Happy reading!
Summary of the "Emergency management" session Deutsch Loading English Loading En français Loading Türkçe Loading العربية LoadingSummary of "Prescription, and then?" Deutsch Loading English Loading En français Loading Türkçe Loading العربية LoadingSharing experiences with other affected peopleLiving with sickle cell disease can be quite a challenge. Nobody knows that better than other people with SCD. Talking to people who are in a similar situation can be such a relief. They “get it” and can share their experiences of handling the condition. Seeing how other people cope with the disease can be inspiring and energizing.

Further information:

Patient organizations and self-help groups General information
ReferencesRobert Koch-Institut. Gesundheit in Deutschland aktuell 2009 (GEDA 2009). (Health in Germany: 2009 Update). https://www.rki.de/DE/Content/Gesundheitsmonitoring/Gesundheitsberichterstattung/GBEDownloadsB/Geda09/chronisches_kranksein.pdf?__blob=publicationFile; last accessed: September 2023Society for Pediatric Oncology and Hematology: AWMF S2k guideline 025/016 "Sickle cell disease". 2nd Edition, 02 Jul 2020.  https://www.awmf.org/leitlinien/detail/ll/025-016.html; last accessed: September 2023https://www.kinderblutkrankheiten.de/erkrankungen/rote_blutzellen/anaemien_blutarmut/sichelzellkrankheit/; last accessed: September 2023 Hoferer A et al. Onkopedia Sickle Cell Disease Guidelines, last revised March 2021.  https://www.onkopedia.com/de/onkopedia/guidelines/sichelzellkrankheiten/@@guideline/html/index.html; last accessed: September 2023Ameringer S et al. J Nurs Scholarsh 2011; 43(1): 22–29Inusa BPD et al. Hemasphere 2023; 7(Suppl): 10–11
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