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  1. How Sickle Cell Warriors Can Transition from Pediatric Care to Adult Care

    April 4, 2016 by Andrea
    Photo: Gratisography

    Photo: Gratisography

    Even as recently as the 1970s, children with sickle cell weren't expected to live beyond their teen years. Now, however, many warriors are living well into adulthood and even old age -- and the healthcare system isn't ready. Many primary doctors don't specialize in sickle cell and consequently aren't as well-equipped to handle the needs of those adult patients. 

    In an interview with The Washington Post, Janoi Burgess, an adult living with SCD, recalls his own transition into adult care at the age of 21. According to the article, Janoi was "'bounced around' to various primary-care doctors for adults, none of whom seemed well versed in the details of his condition." The report continues, saying that during a crisis a couple of years into his transition, Janoi's only option was to go to the ER, where he wasn't seen for a long while, since his issue was pain and that's not seen as more important than other emergencies. Janoi tells The Washington Post, "One doctor even said, "Your labs are okay, so you're not in pain."

    Fortunately, more and more hospitals are starting to catch on to the need for a more structured transition process that includes the patient, the parents, and the adult doctors, but there's still a long way to go. If you are an adult -- or almost adult -- dealing with your own transition away from pediatric care, be sure to educate yourself early about your condition and learn to speak up for yourself and ask questions during your doctor visits. Check out the following resources to get you started. If any of the places listed are located near you, they may be affiliated with your children's hospital, providing for an easier transition:

    1) The University of Pittsburgh Medical Center
    2) Monroe Carrell Jr. Children's Hospital at Vanderbilt
    3) Boston Medical Center's Sickle Cell Disease Transition Guidebook
    4) Sickle Cell Adult Provider Network
    5) Howard University Center for Sickle Cell Disease Adult Transition Program
    6) National Institute for Children's Health Quality Transition Resources

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