A Parent and Provider Share the Importance of Addressing Emotional Health in Patients with Chronic Conditions during National Sickle Cell Month

"Chronic illnesses take no breaks, it's 24/7. There's no time off for holidays, birthdays, vacations," says Robyn Kinebrew, M.A., mother of twins with Sickle Cell Disease and friend of Roadmap. "When you are raising children with chronic illness, you will feel overwhelmed. That's just a part of your story, it’s a part of your journey."

Sickle Cell Disease (SCD) is the most common inherited blood disorder in the U.S., affecting approximately 100,000 Americans and more than 20 million people worldwide. Named after the "sickle" shaped red blood cells, patients with such cells are at risk for stroke, infections, eye problems, and episodes of severe pain.

Just like Robyn's family, there are many other patients and families living with chronic conditions and experiencing similar struggles. Robyn's advice to patient and families is: "It's ok to ask for help. It's not abnormal to want help, need help."

Patients and families don't need or expect their specialty care providers to be mental health professionals, but their providers can help.

To clinicians Robyn says, “Please let your patients and families know that caring for a child with chronic illness is often a difficult journey. Please tell your patients and families ‘it is okay to admit you need help.’” Hear more from Robyn in Roadmap's "How are you doing?" video here.

Dr. Lori Crosby is a Psychologist and friend of Roadmap who was a member of the National Academy of Science, Engineering and Medicine workgroup titled “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.” She shares her recommendations for all providers who care for individuals living with a chronic condition: “Managing sickle cell disease, and any chronic condition, can be a lot for families. Having their trusted provider validate this stress means a lot. As clinicians, it is our job to ensure they have access to as many resources as possible so that their children can thrive physically and mentally. Encourage families to take advantage of support services when needed." 

To help provide such resources, Roadmap created "Developing a Resource List" and "Choosing a Therapist" tools to help clinicians create (or expand) a resource list and assist patients in selecting a therapist.