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Care needs to be individualized because hypochondroplasia can affect each child very differently, says Amarilis Sanchez-Valle, MD, a professor of pediatrics and the chief of the division of genetics and metabolism at the University of South Florida in Tampa.
This individualized care can be coordinated among your child’s primary clinician, geneticist, endocrinologist, orthopedist, neurologist or neurosurgeon (if needed), rehabilitation specialist, and psychosocial supports, says Joshua Yang, MD, the chief of pediatric endocrinology at Orlando Health Children’s in Florida.
If you can, take your child to a multidisciplinary skeletal dysplasia center, says Reni Pekala, a cofounder and the board director of the Hypochondroplasia Foundation, based in Dublin. “These clinics bring together professionals with experience and an interest in skeletal dysplasias, making care more specialised and coordinated,” she says. Pekala also recommends including your child in decisions about their care team as they grow.
Not every child needs every specialist, says Dr. Sanchez-Valle. But as you add to their care team, they can help you figure out who your child needs to see for the best possible care.
