My two adult sons have Adam's Oliver Syndrome

Victorianna · January 2020

My two adult sons have Adam's Oliver Syndrome.
They are 33 and 34 and as they grown older they feel very isolated and with all the things that can come along with AOS,they feel depressed at times.
We are hoping to be referred to the genetics clinic at Leicester to see if they can find out more about their condition,but would love to talk to other adults with AOS.
Many thanks
Vicki

chiarieds · January 2020

Hi @Victorianna & welcome to the community, Vicki. I'm unsure that anyone here has Adams-Oliver Syndrome as it seems very rare indeed. If you haven't come across it, Genetic Alliance may be of some help. See: https://www.geneticalliance.org.uk/

There's also Rare Disease UK : https://www.raredisease.org.uk/

However, there are other parents here that have young people with problems that may also isolate them. Often altho' people have different disorders there are usually others in the community that have some understanding & we all support each other.

There's a section here on Scope that may also be helpful. Here's a link: https://community.scope.org.uk/categories/undiagnosed_rare_conditions

Please join in any discussions, & also say if you have any questions.

emmarenshaw · January 2020

A warm welcome to the community @Victorianna

Chloe_Alumni · January 2020

Welcome to the community @Victorianna!

My two adult sons have Adam's Oliver Syndrome

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