Helpful tips for living
with sickle cell disease

Small steps can make a difference

Managing sickle cell disease may feel overwhelming, but the following tips may help:

It is recommended that you see a doctor familiar with
sickle cell disease—haematologists are specialists in blood
disorders like sickle cell disease. If there is not access to one,
work closely with your primary care doctor
Talk to a doctor regularly about managing sickle cell disease. He or she may have a plan in place to help better manage pain when it occurs
When a pain crisis happens, reach out to your doctor or seek medical help—you do not have to endure a pain crisis on your own
If you go to your A&E (emergency department) or attempt to manage the pain crisis at home, make sure you inform your doctor

Wash your hands, eat safely prepared and healthy food, and get vaccines to avoid getting sick
Try to avoid very hot or very cold temperatures
Stay hydrated (drink 8 to 10 glasses of water a day)

Remember that you’re not alone—family and friends may be able to help you with the emotional and social challenges of sickle cell
Consider joining a support group, and share tips about living with sickle cell
Try to reduce stress, get plenty of rest, and work with a doctor to make a personalised exercise plan

Be proactive with your doctor

Prepare for doctor visits by keeping notes on any concerns or questions you have ahead of time. Then speak up and be honest when talking to the doctor.

When it comes to managing your sickle cell disease, it is important to be open and honest with your doctor.

It may be helpful to start the conversation by telling your doctor:

How pain crises affect your body, mind, and social life
How many pain crises you experience

Transitioning from paediatric to adult care

If you are the parent or caregiver of a child with sickle cell disease, having a transition plan can help navigate into adult care. Working with doctors and other health care providers may help with the transition process.

Transition plan of action RECOMMENDATIONS

From 12-13 years of age, patients and health care providers should begin planning. From 14-15 years of age, patients should learn the medicines and doses they are taking. When patients are 16-17 years old, adult care providers should be sought. After the age of 18, patients should feel comfortable visiting new adult care provider.

Tips for speaking with your child's paediatrician about transitioning:

Discuss all relevant medical history (hospitalisations, pain crises, transfusions); have your primary doctor's
information available
Know the names of your child’s medicines and how much he or she is taking; bring their medicines with you to the appointment
Discuss any symptoms your child has

It’s important to have support for those times you feel alone

People with sickle cell disease may feel less burdened when they have family and friends they can depend on. Don’t underestimate the help others can provide.

3 suggestions to consider that may help you build a network of emotional and social support

1. Talk to a doctor about how you are feeling emotionally and how you cope with pain crises
2. Reach out to those who may be able to help you handle the emotional and social challenges of sickle cell
3. Make connections online with other people in the sickle cell community

More sickle cell research has led to a better understanding of the underlying causes of the condition and the creation of possible therapies. Remember, you’re not alone. There are support groups for people affected by sickle cell disease all around the world. Need help finding one? Ask your doctor if he or she knows of any groups. They might be able to connect you to organisations in your area.

Helpful resources are available

SCD Companion—An App to Manage Sickle Cell Disease

This no-cost app for your mobile device offers helpful resources for those living with sickle cell disease. With the SCD Companion, you can:

Connect with peers—form social networks with other people facing sickle cell disease
Create your digital diary—an easy way to track and record sleep quality, stress, and mood
Record pain crises—keep track of pain crises and triggers
Track daily symptoms—useful reports for sharing with your doctor or health care provider
Gain support—through user stories and 1-on-1 peer interactions