Welcome to the KSG
(Kniest SED Group) page
for
Kniest, Spondylometaphyseal Dysplasia (SMD),
Spondyloepiphyseal Dysplasia (SED),
and all variant forms of SED and SMD!
Do you or does someone you love have Spondyloepiphyseal Dysplasia (SED) or Spondylometaphyseal Dysplasia (SMD) or Kniest? This web site is designed to provide information about these medical conditions in clear and understandable English.
Its purpose is to give people with these rare skeletal dysplasias support, information, and tools to do their own research.
We are not doctors, but were born with rare conditions and have done a
lot of our own research. We hope to bring new people of short stature and
their families into the Little People of America community as well as help individuals get the medical care they need.
We work with medical providers help them research these rare conditions and
foster appropriate research. The information on this website is for informational purposes only and no medical decisions should be based on its contents.
- Please come to the KSG events on Tuesday July 4th at the 2006 Little People of America Conference in Milwaukee.
New diagnosis
- Where do I start?
- Questions and answers for families with recently diagnosed children.
- Explanation of medical terms.
- Information about SMD, SED, and Kniest.
- Extensive resources for learning how to do your own research.
- Exercises and alternative therapies specifically for people with Kniest, SED, and SMD.
- Caring for a person in a body or halo cast.
- Coping with pain.
- Find doctors and other medical providers near you who are familiar with dwarfism.
- KSG Advocacy center: jobs, handling bullies, getting access to health care, scholarships, and information on HIPAA and the ADA.
- Adaptive equipment: gadgets that makes people's lives easier (reachers, car modifications, clothing, footstools, bathroom aids, furniture and more!).
- KSG Advocacy center: jobs, handling bullies, getting access to health care, scholarships, and information on HIPAA and the ADA.
- Scholarships for short people and individuals with Kniest, SED, and SMD and related conditions.
- Stories about the lives of individuals with Kniest, SED, and SMD and their families.
- Newsletters, events, and conferences.
- Coping with pain.
- Site map: detailed list of everything on this page.
- Search the site.
- Tell us what you think of the site.
- Can't find what you need? Please Contact us. We are happy to answer emails and help you find what you need.
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Keep up with what's new on the site, Join the KSG Accouncement List. Become a member of KSG Join the SED, SMD, and Kniest e-group Find a doctor or medical provider near you Browse the table of contents, a detailed site map of everything on this page. Search the site. |
This page was last updated in April 2006.
You are new visitor # since October 2003,
Thank you for visiting. Please contact us if you have any comments
or questions.
Disclaimer
This web site is not intended to diagnose or treat any condition. This web site is for informational and educational purposes
only. Each person should consult a medical doctor regarding
any health concerns. This web site is not a complete reference and the
accuracy of its contents cannot be guaranteed.
By getting information from this web site, you agree to hold harmless the authors of this web site from any and all liability arising directly or indirectly from your use of this information.
Although every effort has been taken to produce an accurate informational
web site, all information should be verified independently. The information on this website is for informational purposes only and no medical decisions should be based on its contents.
This web page is not associated with any organizations referred to on this page. External links are provided only for the convenience of the web page user. We are not responsible for any problems that occur due to the information
included or omitted from this web site and the external links.
All photographs on this Web site are the copyrighted property of the individuals pictured, and have been posted with their
permission. All rights reserved. To obtain legal copies of these photographs for any purpose whatsoever, email support@ksginfo.org.
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Web Page Accessibility
This web page is done using minimal graphics so it
will download fast and be accessible to all browsers, including speaking
browsers used by the blind. All HTML coding was done using a text-editor.
If you have any suggestions about this page's accessibility, please contact Cécilie: support@ksginfo.org.
For more information about web page accessibility, please visit the following pages:
- The Center for Applied Special Technology (CAST), http://webxact.watchfire.com, contains a program that checks web pages for accessibility and has useful web programming links.
- Web Accessibility Initiative, http://www.w3.org/WAI/.
Contacts
This page was co-written by Ronna and Cécilie and is also the web page for the Kniest SED Group.
- For general questions about SED or SMD or Kniest, please email support@ksginfo.org.
- To contact an adult with Kniest, please email Marylou: high10yourlife@sbcglobal.net or visit her website http://www.high10yourlife.com.
- To contact a parent of a child with Kniest Syndrome and Pierre Robin Sequence, email Deslie: deslielynn@hotmail.com.
- To contact the parent of a child with SMD-Kozlowski, email Laura: lahemly@cox.net.
- To contact the parent of a child with SEDC, email Laurie: ldbailyn@hotmail.com.
- To contact someone with SEDC who has had a hip replacement, please email Laura: lzirpolo@earthlink.net.
- For help with car modifications contact Casey, a dwarf and Driver's Ed instructor: chayim76@yahoo.com.
To find more families with Kniest, Spondyloepiphyseal Dysplasia, and Spondylometaphyseal Dysplasia
- Talk to other families with dwarfism.
- Search the KSG guestbook for people looking to meet similar families.
- To find a medical provider near you who is familiar with Kniest, Spondylometaphyseal Dysplasia, or spondylometaphyseal dysplas, visit the KSG medical provider page or Little People of America Medical Advisory Board: http://www.lpaonline.org/lpa_mab.html.
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Thank Yous and web page dedication
Thanks to Mousehouse web design for their skilled efforts in the web page redesign!
Thanks to Jean Nandi and Barb Rhodes for patiently teaching me how to make web pages accessible.
Thanks to Little People of America for bringing support, hope, and fun to so many people.
Thanks to Evelyn and Joan for their superb help editing.
Thanks to Spike who at 5 lbs produces more love per pound than any other four-footed being on the planet.
Thanks to Eric for everything and for managing, even at 72 inches, to produce more love per inch than any two-legged being on the planet.
Thanks to Daniel from Ronna.
Dedication
This page is dedicated to Sue and her service dog Felix. Sue's
strength, intelligence, sense of humor, and desire to
make this world a better place for people with disabilities has been a
tremendous inspiration. Felix, a service dog from Canine Companions for Independence (http://www.caninecompanions.org/) spends his days helping Sue and hoping to make new friends who will throw a tennis ball for him when he is off duty.
