UPDATED May 23 2004UPDATED May 23 2004
Canadian Chapter of
Stickler Involved People
* Our Mission *
Our goal is to educate Canadians, as well as the medical community, about
Stickler Syndrome, a connective tissue disorder; to provide detailed information,
support and resources to Canadian families and individuals suffering from
Stickler Syndrome. We offer current medical information, ways to cope,
networking, supportive listeners, newsletter, and updates for Physicians.
* What is Stickler Syndrome? *
Stickler Syndrome is a relatively common connective tissue disorder. It is
characterized by mild to severe myopia; complicated retinal detachments and/or
vitreal degeneration at an early age; cleft palate; small lower jaw; progressive
sensorineural hearing loss; hyper and hypo mobility of joints; various disabilities
resulting from often unexplainable joint pain and degeneration; variable epiphyseal
dysplasia; enlarged or "swollen" joints, particularly wrists, knees and ankles.
Stickler syndrome should be considered in any infant that is displaying signs
of Pierre Robin syndrome or sequence, along with enlarged joints, myopia,
and/or hearing loss. As well, any child or young adult suspected of having
Marfan syndrome, and who has hearing loss, retinal detachments or vitreal
degeneration, and the onset of degenerative arthritis, arthrosis or Fibromyalgia.
Stickler syndrome has many different manifestations. Often within the same
family it will show a variety of symptoms and severity of symptoms. There have
also been reported cases of it occurring for the first time in a family. In some
families, it has been linked to COL2A1 procollagen on Chromosome 12.
Research is continuing into the identification of a number of possible mutations
on different Chromosomes.
Stickler syndrome, thought for many years to be
rare, is actually quite common, though still rarely diagnosed.
How you can help Stickler Involved People
Igive is a website of advertising that pays Not-for-Profit organizations for your online purchases. SIP is listed, and all you have to do is register us when you sign on. There are over 500 popular stores that participate in this generous campaign (including EBAY, Amazon, Chapters, Lands End, and several Canadian ones, like Canadian Tire!). A percentage of your online purchases will be donated to SIP. Just by using the Igive shopping window anytime you shop online, you can help SIP!
"Most people just don't realize that your deaf child can learn how to speak and to listen."
This website provides invaluable information for parents of hearing impaired children. The Oberkotter Foundation has recently produced documentary films titled "Dreams Spoken Here" and "Speaking for Myself". These are available, free of charge, through the Foundation by visiting the website, or by calling toll-free 1-877-ORALDEAF. They also have a wonderful parent resource kit, titled "Make a Joyful Noise", that includes information handbooks, a video and resources. This is available free of charge as well.
* Stickler Syndrome Links *
Check here for the latest newsletter and information on how to join our list-server, plus more
Dave Hawley's Stickler Syndrome Page
Stickler Syndrome Support Group, England
Geneclinics has a very complete review of Sticklers. Free
registration.
In 1997, SIP held their first National Conference in Iowa City, Iowa. A resounding success, it was followed in 1998 by a conference in Philadelphia PA. Since then annual conferences have been held in Denver, Seattle, Pointe-Claire Quebec, Baltimore MD, San Jose CA, and Chicago in 2004.
SIP's going to DISNEY!!!, July 7-11 2005. Join us for this year's conference being held at Walt Disney World in Orlando, Florida! This year's conference promises to leave you with memories to last a lifetime.
Registration info can be found at the SIP homepage
OTHER LINKS
CORD : Canadian Organization of Rare Disorders
http://www.nwkec.org : check here for some GREAT info on retinal detachments, glaucoma and all the surgeries and procedures available. Very READER FRIENDLY!
Widesmiles : very informative site for cleft palate issues
http://www.pierrerobin.org/ : Lots of info and support for Pierre Robin sequence issues.
VOICE - For hearing impaired children
Arthritis Canada : support and info for arthritis sufferers
Yahoo Groups : Search Yahoo groups for Stickler syndrome, Pierre Robin, retinal detachment,
* Contact Information *
Canadian Chapter of Stickler Involved People
E-mail me at: lockey-shea@canada.com
DISCLAIMER: This site and the information contained within is designed to be relevant to Canadians. The information supplied here is not to be used as a diagnostic tool and is not intended to replace or supplant individual medical consultation. Please take this information to your physician and discuss it together. Canadian Chapter of Stickler Involved People and the author of these pages accept no responsibility from the misuse of the information contained within this website, or from any links supplied. We attempt to keep links current, but do not guarantee the content of any website linked to through this website.