September is National Sickle Cell Awareness Month!

September is National Sickle Cell Awareness Month, bringing attention to a struggle that many Americans face but is not widely understood. Sickle cell disease (SCD) is an inherited blood disorder that affects approximately 70,000 to 100,000 Americans. While the disease is most common among those of African descent, it can be diagnosed in people of other races and ethnicities. One in twelve African Americans carry a sickle cell gene, but only when both parents have the trait are children at risk to develop sickle cell disease. Still today, many people are left to battle the disease alone because of where they live or lack of access to care.

Indeed, it is a battle and it is painful. Problems are caused by irregularly shaped blood cells that can slow or block blood flow and oxygen in the body.  Without sufficient blood flow, a person may experience extreme discomfort in their chest, abdomen, joints, and bones and is more prone to infections. Often, the disease renders them unable to attend school or maintain employment.

One innovative therapeutic process was developed at Maryville University in St. Louis. The Kids Rock Cancer (KRC)  music therapy program is widely recognized for benefiting patients and families dealing with sickle cell, cancer, and other blood disorders. This clinical and evidence-based intervention is available to hospitalized patients and those in other special settings. Therapeutic songwriting is a music therapy intervention often used in many clinical settings. The Maryville community outreach program is unique in offering services free of charge to patients and families, as well as opportunities for music therapy interns through university affiliated internships.

Here’s how it works: When referred by a child life therapist or social services, a board-certified music therapist meets with the child and family for one or two sessions, The music therapist helps guide and support ideas and themes expressed by the patient during these sessions. Those thoughts and feelings are often turned into lyrics of a song.   The music therapist and patient then collaboratively improvise, construct, sing and record the original song with background instrumentation provided by a guitar, keyboard, and/or computer software. When finished, the child receives a recording which can become a cherished family legacy.

“Working with patients to use music to tell their story, reveal what they are experiencing and how it feels, is such an uplifting therapeutic process,” explained senior music therapist Tracie Sandheinrich, M.A., PLPC, MT-BC, Maryville University. “Putting thoughts and words to music is an entirely different level of expression. It’s also the most rewarding contribution I’ve ever made professionally.” 

Since 2009, more than 1,800 children and families have participated in KRC and discovered the power of music. Since Covid-19, KRC music therapists were unable to get into hospitals to continue critical connections with their patients.  Fortunately, an expanded partnership with the local LIGHT Foundation now enables the music therapist to meet with a patient in their safe, private, state-of-the-art LIGHT Box Productions studio.

This September, we are pleased to report that thanks to increased understanding of sickle cell disease, additional support for groundbreaking research, and emerging local partners to offer their facilities for valued therapy, progress is being made and hope is shared by many people.

“The future is bright for sickle cell children born with the disease in 2020 because they will live to adulthood,” said Dr. Michael DeBaun, M.D., MPH, founder of the Vanderbilt University Center for Excellence in Sickle Cell Disease, former Washington University Chair in Pediatrics, and new Maryville University Advisory Board member. “Recent medical research and improved care have combined to ensure children born in this era have improved life expectancy. While newborn screening is required in the U.S, other countries, particularly in Africa, are far behind.”

Support for the Kids Rock Cancer program is always welcome.

Ebonee Shaw, Director of Development, Kids Rock Cancer, Maryville University