Understanding Sickle Cell Disease

The video follows Shaniya, a 16-year-old with sickle cell disease, as she shares her love for music and the challenges she faces. It highlights the role of St. Jude Children's Research Hospital in treating sickle cell disease and the importance of support systems. The video also discusses the need for better education and transition care for patients as they move into adulthood, emphasizing the importance of not letting the disease define one's identity.

What activity makes Shaniya feel normal and connected to life?

• Painting

• Listening to music

• Playing football

• Reading books

What is one of the main challenges teenagers with sickle cell disease face?

• Traveling frequently

• Managing their health while participating in daily activities

• Finding a job

• Learning new languages

What shape is a sickle cell compared to a healthy red blood cell?

• Banana-shaped

• Star-shaped

• Square

• Round

At what age did Shaniya start visiting St. Jude for her condition?

• Fifteen years old

• Ten years old

• Five years old

• Three years old

What is Shaniya's perspective on her sickle cell disease?

• She wants it to define her

• She believes it limits her completely

• She ignores it completely

• She doesn't want it to define her

Approximately how many Americans are affected by sickle cell disease?

• 100,000

• 50,000

• 500,000

• 200,000

What percentage of children with sickle cell disease are expected to make it through childhood?

• 75%

• 50%

• 100%

• 95%

What is a major issue when children with sickle cell disease transition to adult care?

• Lack of medication

• Increase in deaths

• Too many treatment options

• No available doctors

What does Shaniya find important in her support system?

• Having a large group of friends

• Having friends who understand her condition

• Being alone

• Having friends who are also musicians

What is Shaniya's goal regarding her identity and sickle cell disease?

• To be known only for her illness

• To be a leader and make change

• To avoid all social interactions

• To focus solely on her music