September 2024 

First Day of a ‘New Life’ for a Boy With Sickle Cell

Kendric Cromer, 12, is among the first patients to be treated with gene therapy just approved by the F.D.A. that many other patients face obstacles to receiving. He received his first treatment on September 16 2024 

Sickle Cell Disease

The U.S. Food and Drug Administration approved two milestone treatments, Casgevy and Lyfgenia, representing the first cell-based gene therapies for the treatment of sickle cell disease (SCD) in patients 12 years and older.

This disease is caused by an inherited genetic mutation that leads to blood cells that form crescent shapes — sickles — instead of discs. Trapped in blood vessels and organs, the cells cause damage and pain. Gene therapy fixes that problem by giving the patient’s blood-forming cells a new, normal hemoglobin gene.

An estimated 100,000 people in the United States, most of them Black, have sickle cell disease.

Gene therapy dangles the prospect of normalcy for the estimated 20,000 people in the United States with the most severe forms of the disease — lives without constant pain and continuing damage to organs and bones and joints.

After months of waiting and pre treatments he finally started his treatment.

“I really just want to be a kid,”Kendric said.

What is After-School Restraint Collapse?

After-school restraint collapse (“ASRC”) happens when an individual has reached his or her personal capacity for dealing with stress, frustration, or the need to suppress natural behaviors.

The term, coined by the parenting expert Andrea Loewen Nair, describes the way kids can hold in their feelings all day at school and then release them by melting down at home.

For school kids, the world is full of rules to follow, and constantly being told to control their impulses.

School can be particularly challenging: kids are expected to sit quietly in their seats, avoid wiggling, only eat and use the bathroom quickly and at convenient or scheduled times, walk quietly, raise their hands and wait to speak, pay attention, and learn a lot of new information every day. Recess may be short or non-existent (especially for older students), and lunch times can be rushed and chaotic

SOUND FAMILIAR???

How to deal with after school meltdown

1. Meet basic needs: You feel worse when you're hungry, thirsty or wearing uncomfortable clothes--Drink water, eat a snack , change into something comfortable

2. Decompression time: Establish an end of day routine to transition from school to home. Listen to music on your drive home, meditate, take a shower, or just quiet time by yourself. Don't rush directly into something "productive"

    

3. Go outside: after being indoors all day at school ,spending some time outdoors being active is a great stressbuster. Maybe walk the dog, play tennis, or just sit out on your deck