About ‘Let’s Keep Talking’
This website has been developed by Vertex Pharmaceuticals (Europe) Ltd and is designed to support you to work with your healthcare team to find your own way to live with sickle cell disease. It aims to offer ideas and tips to inspire you with ways people manage their sickle cell disease.
So, in these pages, you can hear about and learn from others’ experiences. This can be a great starting point for you to think about what’s important to you, so you can keep talking about and exploring how you want to live your life with sickle cell disease. It’s great that you’re here. This website has been created to encourage and inspire people living with sickle cell disease!
Hear why Dr Drasar thinks talking is so important
What is sickle cell disease?
Sickle cell disease is a genetic disorder, which means it was passed down to you from your mother and father via
The genes that influence what red blood cells look like and how they work are called haemoglobin (Hb) genes. Haemoglobin is a substance in red blood cells that carries oxygen. People with sickle cell disease inherit a faulty version of the Hb gene called HbS. HbS changes the shape and properties of red blood cells, meaning they move less easily through blood vessels. This is what can cause the symptoms of sickle cell disease.1
A person can have either ‘sickle cell trait’ or sickle cell disease, depending on how many HbS genes they inherit from their parents. If they inherit one HbS gene from one parent (a carrier) and a normal Hb gene from the other, they have what is called “sickle cell trait”.3 They do not have sickle cell disease and often live free of symptoms.3 However, if a person inherits two HbS genes, one from both parents, they have a diagnosis of sickle cell disease.1
The most common symptoms of sickle cell disease are episodes of severe pain, known as sickle cell crises.1,2 Find out more about the causes and symptoms of sickle cell disease here.
Your healthcare team is there to support you in managing your sickle cell disease. This team includes all the healthcare professionals you need to provide you with different kinds of care. You’ll see some often and others you will only see if you have a specific need.
Your healthcare team in hospital may include:
- Hospital consultant (haematologist, paediatrician or paediatric haematologist)
- Other hospital doctors (junior medical team and other specialists)
- Specialist sickle cell nurse
- Psychologist
- Day unit or ward nurses
- Pharmacist
You may also see healthcare professionals outside the hospital, which may include:
- General practitioner (GP)
- Community sickle nurse
- District nurse
- Psychologist
- Social worker
- Benefits adviser
Remember, you can talk to anyone in your healthcare team about your health but you may find it easier to speak to particular team members. Whoever you feel comfortable talking to, let them know how your disease is affecting you and your life to make sure you get the care and support you need.
Who does sickle cell disease affect?
Although sickle cell disease mostly affects people from African, Caribbean, Mediterranean and South Asian backgrounds, sickle cell disease can affect anyone.1,2 That’s why World Sickle Cell Day 2022 has the theme Sickle Cell has no colour … it’s in the blood.
Keep exploring
Whether you want to learn more about sickle cell disease or want ideas for how to better look after your mind and body, you’ll find information and stories from other people with sickle cell disease in the following pages.
Go ahead and look around…
LET’S KEEP TALKING SICKLE CELL
- Top tips for self-management
- Your wellness journal
- Setting goals that work for you
- Getting the most out of your healthcare appointments
