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FAQs

When did my child develop this blood disorder?

Sickle Cell is an inherited disease that causes a genetic mutation, on the 11th pair of chromosomes containing a gene responsible for normal hemoglobin production, which was present at birth.

How did my child develop this blood disorder?

A baby is born with Sickle Cell disease only if two sickle cell genes are inherited - one from the mother and one from the father. The birth of a child with Sickle Cell is often a total surprise to a family because many times there is no previous family history of the disease. Since both parents are healthy, they had no prior knowledge that they carried the gene or were at risk for passing the gene on to a child.

Will my next child have this blood disorder?

A person who has only one sickle cell gene is healthy and said to be a carrier of the disease. They may also be described as having sickle cell trait. A carrier has an increased chance to have a baby with sickle cell anemia. Once parents have had a child with sickle cell disease, there is a one in four, or 25 percent, chance with each subsequent pregnancy, for another child to be born with sickle cell disease. This means that there is a three of four, or 75 percent, chance for another child to not have sickle cell disease. There is also a 50 percent chance that a child will be born with sickle cell trait, like the parents.

Can this blood disorder be cured?

Sickle Cell is a hereditary, lifelong, chronic disease, which currently has no cure. That is why the team of experts at Phoenix Children’s Hospital focuses not only on treating a patient’s complications when they arise, but also on helping those patients prevent complications from ever occurring.

What does living with this blood disorder mean for my child?

It means the patient will face challenges, but there are plenty of steps to take to avoid problems and live a healthy, active lifestyle. It also means the patient needs to become their own best advocate—carrying medical information with them, learning about the condition, and avoiding certain medications and activities.

What are the complications of this blood disorder?

Any and all major organs are affected by sickle cell disease. The liver, heart, kidneys, gallbladder, eyes, bones, and joints can suffer damage from the abnormal function of the sickle cells and their inability to flow through the small blood vessels correctly. Major blockages can lead to stroke.

Can a child with this blood disorder lead a normal life?

Sickle Cell is a lifelong disease, but many preventative measures can be taken to keep problems at bay. With careful management, informed decisions, and recognition of complications, many children with Sickle Cell can live relatively healthy lives.

What is the life expectancy for patients with this blood disorder?

The life expectancy has increased over the past 30 years and many individuals suffering with Sickle Cell disease can now live into their mid-40s and beyond. Advances in preventive care and new medications have reduced the life-threatening complications of sickle cell. However, it is still a severe, chronic, and sometimes fatal disease.

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