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A Book Club for Kids with Sickle Cell Disease

February 12, 2025
in Health
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By Ashley Winters

As is the case for establishments treating the illness, a majority of the sickle cell sufferers at SSM Well being Cardinal Glennon Kids’s Hospital are African American. The hospital acknowledged the necessity to present sufferers with books that includes characters that have been consultant of their sickle cell sufferers and their experiences. So, they partnered with Eye See Me African American Bookstore in an effort to incorporate literacy as a element of their method to pediatric care. The Black-owned institution makes a speciality of kids’s books that promote constructive photos and tales about Black tradition and historical past and kids’s books written by African American authors.

The grand opening of The Crescent Membership E-book Membership passed off on Dr. Martin Luther King Jr. Day. Developed by SSM Well being Cardinal Glennon Kids’s Hospital’s Shining Star College–the Costas Middle and Eye See Me African American Kids’s Bookstore, a library of over 270 books was introduced to kids and households affected by sickle cell illness.

“What higher day to acknowledge the significance of our African American group and our togetherness and enhance,” mentioned Brenda Wilson, a college trainer at Cardinal Glennon. “We wish to present kids pleasure and perception in themselves similar to Dr. Martin Luther King did.”

Wilson says some sickle cell sufferers miss college, interrupting their schooling. The hospital contacted Eye See Me co-founder and co-owner Pamela Blair to buy books for outpatients and sufferers with sickle cell illness. She put collectively an inventory of books for infants to twelfth grade. Naomi Blair, daughter of the Eye See Me homeowners Jeffrey and Pamela Blair, mentioned the bookstore has mirror books and window books for youngsters and readers of shade. “When the sufferers learn a e book it will likely be a mirror e book that displays their tradition, their historical past, beliefs, and group,” mentioned Naomi. In line with Naomi, studying books that characterize one’s tradition garners the affected person’s shallowness and self-identity.

In line with the Facilities for Illness Management and Prevention CDC, there are roughly 100,000 people in america residing with sickle cell illness (SCD) and one other 2.5 million residing with sickle cell trait. SCD is a hereditary purple blood cell dysfunction that impacts the best way purple blood cells transfer and carry oxygen all through the physique. Wholesome purple blood cells have regular hemoglobin which is a protein in purple blood cells that carry oxygen. Individuals with SCD have a particular sort of hemoglobin that doesn’t carry oxygen as properly in comparison with those that have a more healthy sort of protein. When sickle hemoglobin releases oxygen, it clumps collectively forming a stiff rod, which causes the purple blood cell to develop into sickled, or banana-shaped. Sickled purple blood cells can pile up and block blood move holding wholesome purple blood cells from carrying oxygen from getting the place they should go. Organs should not in a position to obtain essential oxygen, leading to a myriad of signs – together with anemia and extreme fatigue.

Knowledge from Sickle Cell Speaks exhibits individuals of African descent make up 90% of the inhabitants.

The Cross household is aware of firsthand how tough the illness will be. Cherie Cross’ daughter, seven-year-old Makayla has SCD.  Her different daughter, six-year-old Terri Nicole has the trait. “Having the Crescent E-book Membership permits my daughters to flee the trouble of getting sickle cell illness,” mentioned Cross.  

Kids impacted by the illness will typically be separated from household and associates because of prolonged hospital stays.

“What higher solution to fill that point to permit them to go inward and browse tales about themselves and the group they arrive from,” mentioned Jeffrey Blair. “It takes them to a brand new journey. It’s a spot the bookstore is making an attempt to fill.”

Wilson expressed partnering with the bookstore is such a present. “Our aim is that when kids come right here with sickle cell illness they will depart with a e book,” mentioned Wilson. “We’ve acquired nice books for them to select from.” 

This system is a part of SSM Well being Cardinal Glennon Kids’s Hospital’s ongoing dedication to serving the St. Louis area and offering holistic care for youngsters and their households.

“For teenagers who’ve lengthy durations within the hospital, using a e book can take them on adventures {that a} TV can’t,” mentioned Jeffrey Blair.

For extra data, go to ssmhealth.com.

This submit appeared first on St. Louis American.



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