Sickle cell disease is a lifelong disease
Living with sickle cell disease is not always easy, and no two days are the same. However, it is still possible to lead a fulfilling life with sickle cell disease, and there are ways to treat your symptoms and do something good for your health. Talk to your treatment team and to other people with sickle cell disease. The people around you can also provide you with support.
Important factors for your treatment
Each person with sickle cell disease experiences the disease in a different way.1 In Germany, sickle cell disease is rare, which means that it can be challenging to find a doctor who has experience in treating the
As with all chronic diseases, the people around you can also contribute significantly to your wellbeing. Positive support from people you trust can help you to cope better during difficult phases. You will receive optimal medical support from haematologists, i.e., doctors who specialise in blood diseases, including sickle cell disease.
You can use your appointments with your doctor to ask questions about your disease and its treatment and to tell him/her about any changes in your disease since the last appointment.
It can help you to talk about your disease
Sometimes, it can be difficult to speak openly with the people around you about your disease and your symptoms. You may also have found that occasionally, people do not respond with much sympathy to your symptoms. There can be a lot of different reasons for this. Try not to lose heart – it is important for you to have sympathy and, above all, support. A possible alternative could be to talk to other people with sickle cell disease from a patient organisation in your area, or to your family and friends. Nobody has to manage their disease alone. That includes you!
It can help to get in touch with other people with sickle cell disease and talk to them about your disease. You are stronger together!
Tips for living with sickle cell disease
There are lots of things that you can do yourself; in combination, these things can have a positive impact on your disease.
AVOID INFECTIONS4
You already know how important it is to prevent infections. Regularly washing your hands with soap or using a hand sanitiser can help in this respect. Ask the people around you to do the same. You may also already be taking antibiotics – for example, if you have had your spleen removed.1,4,5
KEEP
We are all aware of the benefits of regular exercise. It can help to keep your heart healthy and improve your quality of life.8 However, fear of pain or dehydration when exercising may cause you to avoid it.8 Make sure you do not overexert or overload yourself, rest when you are tired and drink plenty of water to stay adequately hydrated.4
Before you start engaging in physical activity, talk to your treatment team or other people with the disease. They will undoubtedly be able to give you some good tips on avoiding possible triggers and finding a sport that is suitable
NOT TOO HOT AND NOT TOO COLD: A CONSTANT BODY TEMPERATURE IS CRUCIAL4
Compensating for extreme temperature differences puts a lot of strain on your body. This kind of strain could potentially result in a pain crisis.4 In order to prevent this, it is recommended that you do not expose your body to extreme temperatures.4 For example, you should avoid swimming in cold water.4 And by wearing the right clothing in summer and in winter, you can make sure that your body does not have to overexert itself in order to regulate its temperature.4
TALKING TO YOUR TREATMENT TEAM IS IMPORTANT
Tell your treatment team about the challenges you face in your everyday life and let them help you. It is helpful for your doctor to know how you are and whether anything has changed since your last appointment. This allows him/her to monitor changes in your disease more effectively and offer you the best possible support.
Living with sickle cell disease is different for everyone. There are lots of people close to you and in your treatment team who can support you and make your life with sickle cell disease easier.
- Top tips for self-management
- Your wellbeing diary
- Set targets that work for you
- Get the most out of your medical appointments
