We recognized Sickle Cell Awareness Month and Childhood Cancer Awareness Month this September on our social media. Next Step supports teens and young adults from these populations through our community, music therapy and mentorship programs.
You can help support these young people by learning more about the statistics regarding those impacted by these illnesses and the extra challenges they face during their complicated transition to adulthood.
The Need for Next Step
Sickle Cell Disease
The name is often familiar to many of us, but we do not have a basic understanding of the disease itself. In a healthy person, red blood cells are flexible so they can move through the smallest of blood vessels. In a person with sickle cell, the red blood cells tend to be rigid and shaped like a “C” or sickle. This can cause the blood cells to get stuck and block blood flow, causing at times excruciating pain and infections. Sickle cell affects approximately 100,000 people in the United States, most commonly in people of certain ethnic groups primarily African – Americans, and is the most common form of an inherited blood disorder in the U.S.
Compared to other diseases, so much is not understood about sickle cell disease. Consider, often a person living with sickle cell who is experiencing a pain crisis, is just thought to be looking for drugs, and not believed as they try to manage their health. We have watched our black and brown Next Step youth living with sickle cell disease face the social issues of access to and inequality in healthcare since the beginning of Next Step.
The amount of money put towards the research and the development of a treatment for this chronic illness has lagged behind for decades. This month of awareness is more important than ever for the sickle cell disease community. The issues they face living with this illness have been magnified exponentially in the shadow of COVID-19, social unrest, and inequity in healthcare.
Click here to read an illuminating article in the New England Journal of Medicine on the issue of Sickle Cell Disease and racism.
11,000 children and teenagers under 15 years old are expected to be diagnosed with cancer in 2020 and the number of new diagnoses has been rising over the last 10 years. With the advancement of new treatments, the 5-year survival rate has increased to over 80%.
Being diagnosed with cancer as a child or young teenager can bring some unique challenges. This population is at an important part of their development and the cancer, or treatment, can cause severe complications. Frequent visits to the doctor, scans, or treatment can get in the way of school and a social life. Up to 95% of these patients will have a treatment related health issue that they’ll live with for the rest of their lives.
Click here for more stats on Childhood Cancer provided by the American Cancer Society.
Community, Music Therapy and Mentorship Works
Your ongoing support has helped us continue to offer community, music therapy, and mentorship programs for young people, ages 16-29, coping with the impact of childhood cancer and sickle cell disease for nearly 20 years. In the Next Step community, they can connect with peers and mentors with similar life experiences, learn important life skills and knowledge, and discover who they really are outside of their illness so they can start believing in themselves.