Helpful tips for living
with sickle cell disease

Small steps may help better manage sickle cell disease

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

Get treated
  • It is recommended that you see a haematologist familiar with sickle cell disease—they 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 immediately 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
Stay healthy
  • 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)
Take care of yourself
  • 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.

Mark
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. 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:

Transfusions

Transfusions

Discuss transfusion history and have your primary doctor’s information available

When was your child’s last transfusion?

Medications

Medications

Know the names of the medicine and how much your child is taking; bring their medicines with you

What are your child’s medicine dosages?

Symptoms

Symptoms

Discuss any symptoms your child is having and how strong they are

How have you managed your child’s symptoms?

You are not alone. Get the support you need

Sickle cell brings many challenges with it, but it is important to remember that there is help available.

4 tips 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 family and friends who may be able to help you handle the emotional and social challenges of sickle cell
  • 3. Make connections with other people in the sickle cell community online
  • 4. Look into support groups in your area

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.

You are now leaving NotAloneInSickleCell.com

You are about to leave the NotAloneInSickleCell.com website and enter a website operated by a third party. Novartis is not responsible for and does not control information contained on this third-party website.