 Wendy at work click to see full size picture |
 The 10th anniversary of the SSSG in 1999 at Addenbrookes. L to R: Dr Gunnar Stickler, Wendy Hughes (founder and president of the SSSG), Professor Mike Pope and Martin Snead, Consultant Ophthalmic Surgeon. click to see full size picture |
ABOUT THE SSSG
The Stickler Syndrome Support Group (SSSG) in the UK was founded by Wendy Hughes in 1989. In October 1994 the Group held its first conference in Birmingham. More than 100 people attended from all corners of the UK as well as from the Netherlands and Eire. Dr Gunnar Stickler, who defined the condition in 1965, came over from America for the conference and accepted the Group's invitation to become their Life President.
In 1995, Wendy Hughes published her book Stickler - The Elusive Syndrome, which was warmly welcomed by both medical professionals and families. It is still the only book published on the condition. A new edition has very recently been published. Find out more about the book here.
In January 1997 the SSSG was granted charitable status and successfully applied for a 3-year grant from the National Lottery Charities Board. Three months later a Development Officer was appointed to raise awareness of Stickler syndrome and to develop the group beyond its present voluntary capabilities, and Wendy Hughes was officially recognised as SSSG Founder and Honorary President. Read about Wendy's story here.
Stickler syndrome is a common but little recognised genetic disorder. One in 10,000 persons may be affected, although many medical professionals believe that the figure is considerably higher. Symptoms are variable and can present in different ways even with the same family.
When a symptom appears, it is usually treated by a health professional from one particular discipline (e.g. ophthalmologist, cleft team member, rheumatologist, or an audiologist). Unless all these professionals are aware of the wide range of symptoms which are characteristic of Stickler syndrome (e.g. high myopia, unexplained retinal detachments, early cataracts, a cleft or high-arched palate, hypermobile and/or painful joints, hearing loss etc.) a diagnosis may not be made. Even though Stickler syndrome is a genetic condition, some individuals may present with no clear family history of the condition, and once again a diagnosis can be missed.
Stickler syndrome is still under-diagnosed in the UK. Yet early diagnosis is vital. Individuals who know that they have the condition can:
How the SSSG can make a difference
If you decide to become a member, you will receive:
Joining the Group can help you to find out more about Stickler Syndrome and keep you up to date with advances in the medical world. It also offers you an opportunity to find out how affected individuals and families cope with the condition, and a chance to share experiences with other members.
How much does it cost?
We ask you to pay a minimum one-off membership fee of £20. Please note that the one-off membership fee is per household or per address. The person whose name is on the application form will be the person to whom all correspondence is sent.
Click here for a PDF version (187kb) of the application form or here for an HTML version.
Information booklets for the following topics can be downloaded from this site on the Other Information page.
If you are a medical or other professional you will find further information on Stickler Syndrome on the Professionals page.
Fundraising - Everybody needs a helping hand
The SSSG has many demands on its limited resources and we are kept extremely busy providing information and support to our members as well as dealing with enquiries from professionals. We are aware of some exciting opportunities that could help raise the awareness of Stickler syndrome and developments that may lead to improved diagnosis and treatment of the condition.
Unfortunately, due to a lack of funds, we are not in a position to carry out as many of these initiatives as we would like. We are a small charity that relies almost solely on donations from our supporters and the help of a dedicated team of volunteers.
Perhaps you could give us a 'helping hand' by sending us a donation? No matter how small - your support would be most welcome and greatly appreciated. Please could you make your cheques payable to Stickler Syndrome Charitable trust. Contact details can be found on the home page. You can also donate online via the Bmycharity website.
© 2009 SSSG. Registered Charity Number 1060421