- Untold SCD Stories
- Global Impact of SCD
- Science Behind SCD
- Impact of Pain Crises
- Managing SCD
Managing sickle cell disease may feel overwhelming, but the following tips may help:
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.
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.
Tips for speaking with your child's paediatrician about transitioning:
Discuss transfusion history and have your primary doctor’s information available
When was your child’s last transfusion?
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?
Discuss any symptoms your child is having and how strong they are
How have you managed your child’s symptoms?
Sickle cell brings many challenges with it, but it is important to remember that there is help available.
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.