Living with sickle cell disease means staying informed about various possible side effects and complications. Our sickle cell disease patient education materials provide information you and your child need to effectively manage sickle cell disease.
Sickle Cell Handouts
We developed these handouts to explain common complications of sickle cell and how to treat these complications. Please talk to your child’s provider if you have any questions or concerns.
Sickle cell complications
- Avascular necrosis (AVN) (PDF): AVN is a bone injury that may occur when sickle cells block blood flow to the bones and joints.
- Gallstones (PDF): About half of people with sickle cell disease develop gallstones — hardened deposits of bile that form in the gallbladder. Gallstones can be very painful.
- Nocturnal enuresis (bedwetting) (PDF): Bedwetting is more common in children with sickle cell disease because of injury to the kidneys.
- Priapism (PDF): Recurrent, painful erections of the penis can happen in boys and men with sickle cell disease.
- Sickle cell retinopathy (PDF): This condition can result in permanent damage to the eyes.
Sickle cell and pregnancy
- Contraception (PDF): Pregnancy may cause complications in women with sickle cell. Birth control helps prevent pregnancy.
- Pregnancy (PDF): Women with sickle cell disease can get pregnant and have healthy babies, with proper care. Women should talk with a hematologist before getting pregnant to discuss how to avoid potential complications.
Living With Sickle Cell Disease
Advances in preventive care and new medications have reduced the rate of complications from sickle cell disease, but it is still a severe, chronic disease. You cannot completely prevent your child from developing complications, but helping your child live a healthy lifestyle can reduce the risk of some problems.
Make sure your child:
- Has regular eye exams and stroke screening tests
- Eats a healthy diet
- Gets enough sleep
- Drinks plenty of fluids
Avoid things that may trigger a crisis for your child, including:
- High altitudes
- Cold weather
- Cold water swimming
Help your child avoid infections by:
- Staying away from people who are sick
- Washing hands often
- Getting all recommended vaccinations and screenings