Welcome to the Triple X Support Group Website. The site is to help parents, prospective parents, medical professionals, teaching professionals and those with an interest in finding out more about this relatively unknown condition. This condition may also be known as:- Triplo-x 47XXX Superfemale Syndrome Trisomy X |
There was very little information available when my daughter aged 6.5 years was first diagnosed with Triple X Syndrome. I decided to search for other parents with children with this condition. At the time there was no support group for parents to make contact with one another.so I decided to share information and set up the support group 1997. Over 290+ families have contacted the group since 1997 and around 70 are fully paid members. These receive two newsletters a year are eligable to take part in surveys and learn about any new studies being performed around the word. The newsletters also contact stories from families. There is an information pack available for anyone who would like to send me an e-mail with their address. The cost of membership is £8.00 per annum or $15.00/15.00 Euro's depending on where you live. I run the group from my home in London, England and rely on donations and fund raising from parents and friends to help with the costs of running the group. To obtain further information contact me at E-mail address helenclements@hotmail.com. The group is an International group and we have families from all over the world. We can put you in contact with other parents who have been through the same experiences as yourself or help with difficulties you are facing now. This condition varies greatly from one female to another. Some females have no difficulties whereas other have a variety of problems. These problems can vary greatly in severity. A few of the most common difficulties faced are:- a slightly lower I.Q. level, varing from 10-15 points below the average, learning difficulties, speech delay, co-ordination problems both gross and/or fine motor skills, emotional behavioural problems, taller in stature than siblings and hypotonia (low muscle tone). I work in conjunction with a group called Unique. I will attending their conference to be held on the 21st - 23rd October 2005, their will be a guest speaker and parents will have a chance to meet and listen to each other. This is to be held in Daventry near Rugby. For further information please contact myself of the Unique Rare Chromosome Group Please contact me for any information or advise. |
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This page was last updated on: 30 March, 2005
Other contacts www.triplo-x.org http://home.comcast.net/~MARK.RANSFORD/ www.aaa.dk/TURNER/ENGELSK/ www.rarechromo.org/ |
