What is “mild” FG Syndrome?
The term “mild FG” arose in the mid- 90s when Dr. John Opitz, announced that he was seeing children who seemed to have a “milder form” of FGS in that they expressed many traits of FGS without intellectual disability, and thus they were not fitting the criteria of the XLMR condition as described. Families within the FGSFA began describing their children as “mild FG”. But, for many of those children, the FGS diagnosis is anything but mild. Several have been diagnosed with some of the more severe physical and neurological traits of the syndrome, requiring on-going medical attention.
In the October, 1999 FlaGstone, Genetic Counselor Alexis Poss, described the difference between Mild vs Severe Impairment in FGS: “In the FG syndrome we see children with a wide range of abilities and disabilities. Some may be the social director of their class while others need medication to control aggression. Maybe someone never went to a special education classroom while another needed one-on-one attention at school. There’s no clear line between “mild” and “severe,” but rather a range of impairments that at some level must have brought the child to a doctor or teacher’s attention to receive the diagnosis of FG syndrome. For many the future holds a career and a family, for others assisted living and a sheltered workshop, or possibly an inability to leave the care of his or her parents. Our focus should be turned to helping our children be the best they can be regardless of the level of impairment.”