KSG Information & Support

Kniest, Spondylometaphyseal Dysplasia, Spondyloepimetaphyseal dysplasia and related conditions, info & support group.

Medical Jargon

This page contains explanations of medical terms plain English.

BMI: BMI should not be used as an indicator of health for people with dwarfism. BMI was never meant to be used as a direct measurement of health.

BMI, or Body Mass Index, is a calculation using height and weight. BMI was created by an actuary Adolphe Quetelet in 1832. Originally named the ‘Quetelet Index’, this crude calculation was renamed the Body Mass Index (BMI) in 1972 by Ancel Keys. The BMI calculations were based on European men and is inaccurate for other groups such as people with skeletal dysplasias, women, people of African or Asian descent, very tall and very short people and also athletes. Here is an article about why BMI should not be used for people with dwarfism from the Little People of America Medical Advisory Board. If your medical provider uses only a BMI to determine if you are overweight, try sending them a copy of this article.

Cleft Palate: A cleft palate is an opening or split in the roof of the mouth that occurs when the tissue doesn’t fuse together during development in the womb. According to the Centers for Disease Control and Prevention (CSC), about 1 in every 1,700 babies is born with cleft palate in the United States. A cleft palate can also affect the lips, but can also occur without affecting the lips. Cleft Palates are common among babies with KSG and require surgeries for correct them.

Kyphosis: Kyphosis is an exaggerated, forward rounding of the upper back. Kyphosis is common in people with Kniest, SED and SMD.

Scoliosis: Scoliosis is a sideways curve of the spine. Scoliosis is common in people with Kniest, SED and SMD.