Triple X Study Day 30-9-2007 Oxford U.K.

This report is written by one of the mothers who attended this day.
She has a 12 year old daughter with Triple X Syndrome.



On Sunday 30 September Unique (Rare Chromosome Disorder Support Group) held a Triple X Study Day in Oxford for families with daughters with Triple X Syndrome. Twenty families from across the UK participated.

Guestspeakers
In the morning we heard talks from Patricia Jacobs, Professor of Human Genetics, Wessex General Genetics Laboratory and Gary Butler, Professor of Paediatrics [Growth & Development], University of Reading.
They each gave an overview of sex chromosome abnormalities and Triple X Syndrome in particular, from the perspective of their individual specialism and with particular reference to the Edinburgh Study.

Mixed feelings
Not everyone present agreed with some of the information presented.
For example, one professional suggested that there was no research which showed that there was a tendency for Triple X girls to be taller than average in stature, something several families were unconvinced by.

Workshops
In the afternoon we were divided, according to the age of our daughters, into two working groups which discussed behaviour and social skills, and learning and communication, including speech.
Although each one of our girls is unique, there was much common ground, and I am sure we could all have talked together for much longer!
There may sometimes be a tendency to attribute to Triple X Syndrome each ‘out of the ordinary characteristic’ we notice in our daughters.

Common Ground and Contrast
However there was much common ground in the experiences and attributes
many of the girls shared, such as a tendency to be tall, to have problems with their teeth, emotional immaturity,difficulties making and/or sustaining friendships, pains in the legs and/or abdomen, ‘bendiness’, poor coordination, poor short term memory, (over-)sensitivity to e.g. loud noises, the feel of clothing, etc.
There were also contrasts between girls in that some displayed behavioural problems such as temper tantrums inappropriate for their age, whereas others had calmer, and had a shy temperament.

Research Study
Finally, we went on to learn about a forthcoming research study, sponsored by the University of Oxford, but involving professionals from a number of other institutions.
The study aims to find out whether children who have an extra X or Y chromosome experience any problems or difficulties during their childhood.
It will involve 50 families with daughters (aged between 4 and 16) with Triple X.
I was particularly pleased that the study will look at language and cognitive issues – areas.

Sessions
The morning sessions were helpful in summarising some of the research which has so far been conducted into Triple X and they provided a good background for the discussions and briefings which followed.
The afternoon sessions were very rewarding especially because of the
inputs from individual families, and some of their daughters.

Overall, it was a great experience to be able to talk with other families and discuss the experiences we have shared.

Many thanks to Unique, especially Prisca Middlemiss, for organising the event.

[English section] [Meetings]