16p13.11 duplication

[Orkneykid71]

Does anyone have or have a child with

16p13.11 duplication?

Any help would be very much appreciated. This is a new journey for us with our newly diagnosed 13 year old son.

[Florence2020]

Hi,

Is this to do with chromosomes? My 18 year old daughter has an unbalanced translocation between chromosome 3 and 9, she has learning difficulties and epilepsy.

[DebbieHatry8 in reply to Florence2020]

HiMy daughter has 16p11.2

Contact Unique and register with them. You are then able to connect with other people and families as everyone is on the database.

They also have recently published several guides to many different Chromosome Disorders which are helpful.

Hope this helps

[Sarah_Mencap]

Hello and welcome

Thanks for posting on here.

I wondered if you had been in touch with either geneticalliance.org.uk/ or raredisease.org.uk/ as they may be able to help.

Although there may not be other families on here who have direct experience of this particular condition, they are likely to have lived through similar situations in terms or getting a diagnosis and how this affects you son (and you) on a day to day basis.

I hope this helps a little

Sarah

[Gower22]

Hi Yes My Daughter , she is 17 , she has few problems but but i had to push for testing , i mangaged to get her into collage in a specila unit , but looks totaly normal , but fussy eatter anxiety and immune problems. understanding speach but getting better with age, but behind,