What is Sickle Cell Disease?
Sickle Cell Disease is a genetic blood condition. It affects the hemoglobin in red blood cells, causing them to form a rigid, sickle shape. These irregular cells can block blood flow, leading to painful episodes called “pain crises,” higher risk of infections and potential organ damage.
Common symptoms of SCD include chronic pain, fatigue and slower growth and development, which can majorly impact daily life.
Challenges Faced by Teens with SCD
- Physical Health: Frequent pain crises can disrupt school, extracurriculars and social activities. These taxing episodes can leave teens feeling isolated and frustrated.
- Emotional and Mental Health: The constant worry about their health and the future can lead to anxiety, depression and stress. Regular medical appointments and treatments add to teens’ emotional load.
- Social and Academic Pressure: Keeping up with school and a social life can be hard when you’re often absent or in pain. There can also be stigma or bullying related to the condition.
- Transition to Adult Care: Moving from pediatric to adult healthcare systems can be daunting. It requires teens to take charge of their health and medical decisions.
Strategies for Managing SCD in Teens
- Complete Medical Care: Regular check-ups with specialists are crucial. These visits help manage symptoms, monitor problems and adjust treatments as needed. Carilion Clinic’s Sickle Cell Collaborative uses a team approach, giving patients access to a range of experts.
"We bring dedication to our work every day, caring for our patients like we would one of our family members. You don’t have to navigate this alone,” says Angela Venuto-Ashton, MD, Carilion Clinic physician and Collaborative team member.
- School Support: Schools should offer help like flexible attendance policies, extended deadlines and access to a school nurse. Individualized Education Plans (IEPs) or 504 Plans can ensure these needs are met.
- Mental Health Resources: Emotional support is essential. Counseling or therapy can help teens cope with the emotional challenges of living with a chronic illness. Carilion’s Sickle Cell Warriors support group can provide a sense of community and acceptance.
- Healthy Lifestyle Choices: A balanced diet, regular hydration and adequate rest are important. Avoiding extreme temperatures and staying active with low-impact exercises can also help.
- Education and Advocacy: Empowering teens to understand their condition and advocate for their needs is crucial. Educating teachers, peers and the community can reduce stigma and foster a supportive environment.
- Transition Planning: Preparing for the shift to adult healthcare should start early. This includes learning about medical history, medication management and the importance of regular medical follow-ups. Creating a transition plan with healthcare professionals can ensure a smooth changeover.
“Research has shown the importance of transition programs for adolescents living with SCD,” explains Karen Marable, FNP. “Due to the correlation between transfer care gaps and increased rates of hospital admissions, the Sickle Cell Collaborative begins assisting with the transition process at age 15. Our team aims to support and empower each teen as he or she begins to independently navigate the often-confusing healthcare system.”
Looking Ahead: The Future of SCD Treatment
Advances in medical research are bringing new hope for people with SCD. Gene therapies and bone marrow transplants could improve the quality of life for those with SCD. There are also several medications approved to prevent issues and manage symptoms.
This is a challenging time for any teenager. But for those living with SCD, these years can be extra demanding. Effective strategies can help those with SCD navigate their teen years with better health and greater confidence.
Our Sickle Cell Collaborative team is here to help patients and caregivers. The Sickle Cell Warriors support group meets the last Tuesday of every month. For details, call 540-526-1597.
