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XXYY Do you know this guy
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A detailed booklet of information has now been published by "UNIQUE" The UKs Charity for Rare Chromosome Disorders based on UK parents completing a huge questionaire survey from their experiance of a family member being a XXYY male.
This website is writt
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Website built through knowledge and experience !
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Dr's say XXYY syndrome is a rare X/Y variation, that affects 1 in 17,000 babies born.
These guys may need help and assistance to cope and manage their disabilaties and difficulties, by first understanding the difficulties and disorders within them, to help them acheive a full and confident active life.
1 in 200 babies are being born with an X/Y variation,thats double what it is for Down Syndrome which is one extra chromosome.
Some children/adults with an X/Y variation share a number of different diagnosis,such as Autistic spectrum disorder, Central auditory processing disorder, Sensory Intregration dysfunction, Speach/Communication and Understanding disorders, among others.
I do believe that children with a speach disorder or have the diagnosis of the ASD or ADHD ,should be tested for an X/Y variation as early as possible.If I had my way I would have all new borns tested at birth.
Male children/adults with an X/Y variation,often lack their natural ability to produce it's own Testosterone, which is important for their natural growth into adulthood and improve mind and body.
Since my son recieved the diagnosis when he was 14yrs old ,we have found other families and have since got together in the UK,The first time others have met another family with a male being a XXYY male which then went on to creating a support group to help others in the UK.
http://uk.groups.yahoo.com/group/xxyysupportgroup/
The UK Fellowship is not in participation of any research programs nor does it hold a database on families and individuals but is a support group formed by other UK parents offering support and help for the here and now.
I have found not many people has heard of XXYY Syndrome including the medical world in the UK.
There are other XXYY families out there who need to know "whats going on with their boys".
And as a society we need to start to reconise that there could be issues with children among the population with " something going on deep down " that could be the possible root cause of the change in our children's behaviour or emotional well being.After all its our genes and chromosomes that decide who we are, And with scientists finding the gene that causes Autism here in the UK, surely there is a need to start to find out WHY more of our children are having to deal with issues they have been born with and not caused through living in the ever changing society we do..
This site is about males that have double the chromosomes than the normal male and which is the prime reason why some are affected in their behaviour and emotional state,just like our average young teenager has the similar "out burst issue " but can be worse and dont have the Testosterone issue.
As people are now learning more about XXYY and starting to realise "this may not be as rare as they originaly thought,eyes may start to open and wonder, if thats what is the reason behind SOME XXYY guys , Then THINK, whats going on deep inside the rest of the male population especially this generations teenagers!
The next few pages are from what I have learnt and seen for myself from being a mum of a 17yr old and a survey research conducted by "UNIQUE" the UK Charity for Rare Chromosome Disorders, also being 1 of 3 organisers of the first Get Together for XXYY families,having 19 different personalities around me all with the X/Y variation of XXYY and feel very humble to have done and listening to Dr Tartaglia as she explained how males can be affected by extra chromosomes..
This website is written by a mere mum who after 14yrs of knowing "some things were different with my son " and having the gruelling expedition of going from 1 professional person after another, over 20 different professionals in 5yrs and not one reconised that my son showed Autistic traits,when in reality if at the age of 5 when his personality was seen to have changed in a dramatic way,(co/inciding with starting school).
Had a simple blood test to see if extra chromosomes were present then the massive struggle through the educational system and trying to get services and help,would not of been such an exhusting mission.
Copyright © XXYY Do You Know This Guy.
All rights are reserved.
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