[3] It was first discovered in 1978 by H van de Berghe et al., when they described four males (consisting of three brothers and one maternal nephew) of a two-generation family with a "lobster-claw foot" and an "ulnar defect".

Van de Berghe et al. also noticed that some female members (the mother and maternal aunt of an affected male) showed minor hypoplasia and slight deformations of the toes, as well as shorter ulnas and marginally curved radii.

[3] Minor severity of said ulnar defect and toe syndactyly in female members of the same family studied in the original discovery suggested that this disorder was transmitted in an X-linked recessive manner, although autosomal dominance with reduced penetrance wasn't excluded as an inheritance pattern.

[2] Treatment of the condition can include reconstructive surgery or the use of prosthetics to improve the ability to carry out daily tasks.

Additionally, many organizations offer opportunities for patients and caregivers to speak with a health professional through the phone as well as enrol in educational support programs.