SUCCEED Team in Oklahoma

From the perspective of a physician who has raised two healthy twenty-something daughters with complete AIS, and mothered dozens of other children as a family adviser to the AIS/DSD Support Group, the Oklahoma City SUCCEED Clinic for DSD care is a huge success. This Oklahoma City team is truly committed to caring for the whole child and family, who are all affected in different ways by living with a DSD.

The SUCCEED model of holistic care, in which clinicians collaborate to create recommendations focused on improving all aspects of family well-being, is a dream come true for families. While families appreciate the convenience of visiting multiple specialists on the same day in centers offering interdisciplinary care, it is unusual for those specialists to set aside office hours during which they convene in a single place to see patients and create a unified plan.

True “team” function is greatly enhanced by members’ commitment to see all of their DSD-affected patients solely in the SUCCEED clinic setting. Treatment is simplified by the use of standard mutually agreed upon protocols, which have improved compliance with medical follow-up and increased the number of families who receive structured education and psychosocial support from peer groups and mental health professionals. The clinic is able to track these outcomes by obtaining family consent for entrance of data into an IRB-approved database.

Caring for families means caring about families. As a mother who dreaded many trips to the pediatric endocrine clinic during the childhood treatment of my two children with DSD, I saw evidence of an attitude of respect and compassion reflected in many details at the SUCCEED clinic that are especially meaningful to families. The cheerful logo helps minimize anxiety that parents feel when they have to explain what DSD means before getting directions to the clinic. While clinicians may feel an obligation to destigmatize disorders of sex development by speaking about them openly, families who are facing a very challenging parenting situation need to receive constant positive reinforcement that they are capable of raising a healthy child.

The SUCCEED acronym succinctly conveys that message with a single word. The clear and simple website with embedded videos is a terrific introduction to the friendly staff. What warms this mother’s heart the most, though, is the extraordinary commitment of staff to provide children with opportunities to make friends with others who are just like them at overnight camps. The lack of peer support for themselves and their children has been described many times by the families in the AIS/DSD Parents Support Group as excruciating.

I hope that SUCCEED clinic members will build on their local networks by referring families to the AIS/DSD national support group that is moderated by an acclaimed medical expert in DSD care and inclusive of all families regardless of diagnosis. These are just the kinds of bridges we need to build from one place of success to another.

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