Managing KS

Managing KS

Receiving a diagnosis of Kabuki syndrome will initially bring a whirlwind of medical appointments to determine if there are any physical issues that require attention. During infancy, feeding challenges often become the priority. In addition, there may be cardiac or hip dislocation complications to resolve.

Hints for Parents

Volunteer to Career

Finding volunteer opportunities for your young-adult child may help determine his interests and strengths and help with transition planning.


Meet our new 'Trende-setter'!

Trende is an online fashion/film/food company.  We are incredibly proud to announce that their model for this June is Jordan Reinman, a young woman with Kabuki syndrome! As stated on their website, "Jordan is an inspiring woman who has learned to love life no matter her circumstances and found that loving herself and living for others had the power to change her life.

Last updated: Saturday, July 23, 2016 - 06:30

Troy's Amazing Universe

TostenEnjoy this delightful children's book series, Troy's Amazing Universe, authored by Sharon Tosten.  The main character, her son Troy, has Kabuki syndrome. Sharon wrote the books because although Troy has learning problems, he manages to keep up with the world around him with his unusual talent and cheerfulness.

Last updated: Saturday, February 13, 2016 - 16:03

Finding and/or Creating Employment

Dr. Judith Gross, PHD, an assistant research professor at the Beach Center on Disability at the University of Kansas, is an expert on finding employment for people with disabilities. She provides valuable advice and information in her webinar presentation, "Employment Expectations and Resources."

Last updated: Saturday, July 23, 2016 - 06:38

Anesthesia for a Child with Kabuki Syndrome



An older article, but still relevant today as authors list characteristics that may affect anesthesia care.

Last updated: Friday, January 23, 2015 - 09:20

Anesthesia Management in a Patient with Kabuki Syndrome



Anesthesiologists should be aware of a possibly difficult tracheal intubation, cardiac lesions, respiratory problems, neurological and musculoskeletal disorders and a latex allergy when dealing with the anesthetic management of a patient with Kabuki syndrome.

Last updated: Friday, January 23, 2015 - 08:47

Transitioning to Adulthood Videos

Four videos that offer guidance to individuals, families and caregivers in the transition process from education to employment and from family home to independent living. Produced by the Nemours Children's Health System in Delaware, they were one of the recent recipients of the Impact Reward from Genetic Alliance.  As part of this award, two additional videos will be devoloped.

Last updated: Friday, May 30, 2014 - 08:31

Apps For Success

Good apps for individuals with special needs can be hard to find - in particular, apps with simple menus to facilitate independence.  Following is a list of apps which have passed the test! 

Last updated: Friday, February 21, 2014 - 19:29


Check out these items that help make life a bit easier.

Last updated: Friday, April 10, 2015 - 10:41

Personal Transition Accounts

Transitioning from childhood dependence to adulthood independence is something that all of us must eventually tackle. Included are stories from parents of young adults with Kabuki syndrome and some of those young adults themselves.

Last updated: Thursday, October 9, 2014 - 11:25

Kabuki Syndrome

A comprehensive summary of Kabuki Syndrome, including diagnosis, clinical description, differential diagnosis, management, genetic counseling, molecular genetics, and resources. Compiled and submitted to GeneReviews by Dr. Margaret Adam and Dr. Mark Hannibal from the University of Washington and Dr. Louanne Hudgins from Stanford University. It has been formatted by KSN into a handy pdf file for easy donwnload.

Last updated: Monday, November 21, 2011 - 13:44