Navigating sickle cell: Your resource hub

Welcome to medMin Advance LLC's resource page for individuals and families affected by sickle cell disease. Living with sickle cell is a full-time job, and we're here to provide the support and resources you need to navigate your health journey with confidence. Explore essential information, support options, and ways to connect with comprehensive care. We're committed to helping you understand your options, coordinate your care, and advocate for the services you deserve.

The cornerstone: Regular follow-up care

Regular, consistent follow‑up care with a knowledgeable healthcare team is the single most important thing for managing sickle cell disease. Major health organizations emphasize this core message because regular care helps prevent complications, catch problems early, and keep treatment plans up to date.

The National Heart, Lung, and Blood Institute recommends that people with sickle cell disease see their provider every 3–12 months depending on age and disease type. Routine follow‑up ensures vaccines are up to date, medications like hydroxyurea are taken safely, pain action plans are in place, and organ complications are monitored early.

At each visit, your team should review symptoms and pain patterns, adjust medications, update vaccines, screen for complications, strengthen your pain action plan, and discuss lifestyle factors.

Addressing the gaps: Comprehensive support

The most often missing support for individuals and families dealing with sickle cell disease is comprehensive, coordinated care across the lifespan, especially during the transition from pediatric to adult care. This includes:

  1. Comprehensive, lifelong care: Access to coordinated, multidisciplinary care teams.
  2. Transition support: Assistance navigating the shift from pediatric to adult care, including a consistent hematologist and pain management plan.
  3. Caregiver support: Emotional and mental health resources for caregivers, along with clear communication from providers.
  4. Culturally responsive care: Addressing racism, bias, and lack of culturally competent care.
  5. Educational support: Clear, accessible information about medications, warning signs, and home management.

Take action: Connect with support

Reach out for consistent, ongoing care and support — don’t try to manage sickle cell alone. Everything else (education, crisis planning, pain management, advocacy, emotional support) becomes easier once you are connected to a steady source of help.

medMin Advance LLC provides personalized health care case management for individuals and families affected by sickle cell disease and other chronic conditions. We stand beside patients, helping them understand their options, coordinate their care team, and advocate for the services they deserve. We also provide caregivers who sit with patients when they are in the hospital environment.