KSG Information & Support

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

Author: amandaraoul

  • First Blog Post: top 10 things not to say to a person with dwarfism.

    What not to say 1: How’s the weather down there? Hey short stuff! Why not to say it: it’s rude.What to say instead: Say hello. Call someone by their first name, as you would anyone else. What not to say 2: Do you have kids? Are they normal? Why not to say it: Normal is…

  • List of questions to ask about a medical test

    Questions for a medical test

  • Not Short on Talent

    By HP Poudre’s Sarah Hunt, a dwarf, ranks among elite swimmers Sarah Hunt dives in the water and begins pumping her arms and kicking her legs in a furious manner – all while living the American dream. Living the dream is often easier said than done, just not for Hunt, 15, who stands only 4-foot-5. Hunt…

  • Got Retinal Detachment??

    Written by Marylou, a woman with Kniest. Floaters and flashes… signs of retinal tears and detachment. Marylou needed a new retinal specialist in a hurry. Thanks to good friends like Rosa, scheduling a doctor’s appointment was a snap. I just had to share this story…I recently had increased symptoms of detached retina…you know the typical floaters and…

  • Your Child with SED

    Your child with SED from Birth to 36 months Written by Christine, a parent of a child with SED Infants and children diagnosed with a form of Dwarfism are entitled to various services and programs in the United States. As a parent of a 3 year-old daughter diagnosed with SEDC, I have sought out some…

  • Musing about fashion and fitting in

    By Monica, a woman with SED who is 2’8″. True, fashion is one way teens try to fit in a group and yet express themselves as an individual. Thinking back 7th and 8th grade were not so easy. What helped? Well, what I couldn’t get to fit in name brands, my mom bought me in…

  • Brittani’s Story

    By Brittani, an 18-year old with Kniest. High School Dating Scene I am 18 and a sophomore in college and know all too well the fun of dating with a disability. I did go to Prom though in high school twice, I went with guy friends. It was very informal we had a nice time…

  • Trevor and Pierre Robin Syndrome

    A child with SED and Complications at Birth Written by Jenny, a parent of Trevor with SED and Pierre Robin Syndrome. Trevor is now twelve years old. He had a vent until age three, trach tube until age eight. I’ll try to remember everything. Trevor was born full term by c-section, in the early 1990’s. We did not…

  • It’s Not Fair

    An averaged-sized mom and her daughter with Kniest learn, scream, pray, grieve, and grow together. By Delia, parent of an 8-year old girl with Kniest. My daughter asked me about her height at age 3 1/2 years old. It was cool that we were in our hotel room at our first National Dwarfism Conference, in LA. I…

  • Kniest Dysplasia

    Description Kniest Dysplasia is a very rare condition that leads to short stature, malformed bones and joints, and sometimes vision and hearing problems. The condition was named after Dr. Wilhelm Kniest in 1952. Kniest affects in 1,000,000 live births. The disorder affects males and females in equal numbers. Symptoms At birth: In children and adults:…