Your life with sickle cell.
Living with a lifelong condition can be a challenge. Some days can be easier than others. But choosing to think about how you want to live with your sickle cell disease is an opportunity for you to take control. It may allow you to feel in charge of your condition, rather than letting sickle cell disease take over your life too much.
It is possible to live a full – and fulfilling – life with sickle cell disease. There are ways to look after your health and manage your symptoms. And living with sickle cell disease may look different for you to how it looks for other people.
Keep talking to your healthcare team and people around you to let them know what support you need.
Think about what’s important
Sickle cell disease is a complicated condition, so it’s important to know what medical care is available to you. It’s also important that you have a good relationship with the people who help you manage your symptoms, so take the time to find people in your healthcare team who explain clearly what you need to do and help you think positively.
If you’re not sure which healthcare professionals are likely to be part of your healthcare team, you can see an overview here.
It’s likely you will be under the care of a haematologist – a doctor who specialises in blood disorders – as part of the healthcare team looking after you. If you have any specialist questions about your sickle cell disease, make a note to ask your haematologist about them. Make sure you attend regular check ups with your healthcare team, so you keep on top of any issues and optimise your health.
An important part of living with sickle cell disease is to set up a good support system to help you. This can be family, friends or your local community and/or your healthcare team. There’s no need for you to try to manage your condition alone.
Different people have different strengths, offering both practical and emotional support. You might consider joining a support group, where you can share experiences, if you don’t have lots of people around you.
It’s important to keep talking. Opening up about the impact sickle cell disease has on your daily life, both personally and at work or school, can trigger a bigger conversation that may bring welcome change.
General tips for living with sickle cell disease
There are a few things you can do that together could have a big impact on how you’re living with your sickle cell disease.
TRY TO PREVENT INFECTIONS
If you have sickle cell disease, you are more likely to get infections, so it’s important to try to avoid this.1 A regular daily antibiotic should be offered to all children with sickle cell disease to help prevent infection.1
When moving to an adult service, you can discuss whether you should carry on taking a daily antibiotic. You may decide to continue them or to keep a supply at home for use in emergency situations.1
General good hygiene can also help.2 You should also wash your hands frequently using soap and water, or a gel hand cleaner containing alcohol. Encourage your family and the people that support you to wash their hands too.
PRACTICE FOOD
Be careful with food preparation so you can avoid food poisoning. Practice good hygiene when preparing food and make sure food is cooked and stored correctly, especially when cooking leftovers.
TAKE
Vaccines are a simple way to help prevent infections. Your healthcare team will discuss any vaccines you need to help make sure you’re protected.
STAY
We all know the benefits of regular exercise. It can keep your heart healthy and improve your quality of life. But worrying about pain or dehydration while exercising might mean you avoid it. Make sure you don’t overdo any exercise, rest when you get tired, and drink plenty of water to keep yourself hydrated.
Talk to your healthcare team first about staying active. They will know what support you need to get started safely with your chosen activity. You can also see our top tips here.
MAINTAIN A BALANCED BODY
It’s important that you try not to get too hot or too cold. Try to manage this within reason. Swimming in outdoor unheated pool might not be a suitable place to exercise, for example.
REMEMBER TO KEEP TALKING
Don’t forget to keep talking to your healthcare team and others who support you to keep making improvements. Sharing your feelings can help you navigate the different daily changes that come with living with a lifelong condition.
Letting your healthcare team know about how sickle cell disease is affecting all parts of your life is important – so keep talking and let them know what has changed at each appointment.
Managing life with sickle cell disease means different things to different people. It’s what helps you that matters.
You’re an important decision-maker, partnering with your healthcare team and being part of decisions that affect your health. There are lots of people to help you on your journey to living life your way with sickle cell disease.
- Top tips for self-management
- Your wellness journal
- Setting goals that work for you
- Getting the most out of your healthcare appointments
