About the “Realtalk! Sickle Cell Disease” website
This website has been developed by Vertex Pharmaceuticals (Germany) GmbH to support and guide you with as many of your questions as possible in relation to sickle cell disease.
For example, it includes advice from other people with the disease about how they manage their everyday lives. This can be a good starting point for establishing what matters to you regarding the management of your disease and what you would like to share with your doctors and the people around you.
Hearing from other people with sickle cell disease about how they manage their condition may also inspire and motivate you. It's great to have you here!
What is sickle cell disease?
Sickle cell disease is a
The red blood cells of healthy people are able to move through the smallest blood vessels without difficulty. Each red blood cell contains haemoglobin molecules.4 Haemoglobin is responsible for transporting oxygen to the tissues.4 It also gives red blood cells their colour.4
Haemoglobin does not work properly in people with sickle cell disease, and it changes its shape once it has delivered the oxygen to the tissue.5,6 This causes the red blood cells to adopt the sickle shape typical of the disease.5,6 They are no longer elastic and can therefore get stuck in and block small and minute blood vessels in particular.5,6 This results in reduced blood supply to organs and tissues, which causes symptoms.5,6Chronic anaemia also occurs, as sickle cells are broken down very rapidly5,6
The reason for this change lies in the genes that provide the construction manual for haemoglobin.3 These genes are known as haemoglobin (Hb) genes.3 These haemoglobin genes have undergone a change in people with sickle cell disease.3 This mutated form of haemoglobin is known as sickle cell haemoglobin HbS.3
A person is born with sickle cell disease if they inherit two of these HbS genes, one from each parent.3 In most cases, if a child receives an HbS gene from only one parent and an unchanged Hb gene from the other parent, the child will not have sickle cell disease or any symptoms.3 However, they will be a carrier of this gene and can therefore pass it on.3
The severity of the disease and the resulting symptoms can be very different.6 One of the most common symptoms of sickle cell disease is severe pain, also referred to as pain crises.6 These pain crises can be triggered by physical exertion, among other things.6
Find out more about the causes and symptoms of sickle cell disease here.
Patient organisations and other people with sickle cell disease can provide you with great support and helpful tips. Your treatment team can also help you with targeted measures to meet your needs and improve your everyday life.
Sickle cell disease occurs more frequently in the tropical regions of Africa, in the Middle East, in large parts of India, in Eastern Turkey and in certain areas of Greece and Southern Italy.6 Nevertheless, it can affect anyone. For this reason, in 2022, World Sickle Cell Day was held under the motto "Sickle Cell has no colour... it's in the blood".
More information
Whether you want to know more about sickle cell disease or are looking for tips for your everyday life and health - here you will find accounts from other people with the disease as well as plenty of other helpful information.
Why not take a look around?
REALTALK! SICHELZELLKRANKHEIT
- Top tips for self-management
- Your wellbeing diary
- Set targets that work for you
- Get the most out of your medical appointments
