Providing Peer Support for DSD/Intersex Children

Aim

To recruit a Peer Support Therapist to provide children with DSD & their families advice & guidance to support their mental health - UK Wide

With your help, we can revolutionise how we offer incredibly important and life-changing support to children and young people with Different Sex Development and their families across the UK.

Please consider donating, you will genuinely transform a child's life.
Thank you!

What are we fundraising for?
dsdfamilies is a small, but leading, information and peer support charity for children and young people living with different sex development (DSD), and their families.
We need to recruit a Peer Support Therapist to provide vital support, particularly online during the pandemic, to help support the mental health and wellbeing of children, young people, and their families.

What is DSD?
On average, every 3 days a child in the UK is born with DSD.
DSD stands for Differences, Diverse (or as doctors might say Disorder) of Sex Development- an umbrella term for over 40 different conditions. It's sometimes referred to as having Intersex Traits and it can apply to anything from differences in sex chromosomes and internal reproductive organs, to atypical genital appearances. Every year in the UK, approximately 150 children are diagnosed with DSD, meaning there are approximately 2,300 children and young people living with DSD conditions in the UK. Sometimes a midwife will spot DSD characteristics at birth, sometimes they won't be discovered until puberty. 

Given the intimate and private nature of these conditions, seeking help and support for them can be extremely difficult for both the child and their family, and we at dsdfamilies are working hard to change that.

What are the problems currently facing this community?
Children with DSD may often have trouble socialising and developing self-confidence. When your body is different from your peers this can be a real barrier to overcome, and without access to the right support, this can be debilitating as children grow up.
Many parents of children with DSD don't have any resources or parenting support to help guide their children and often aren't able to fully understand what their child is going through as they grow. Therefore, accessing high-quality peer/social support to guide them can be life-changing for both parent and child.

Difficulties with self-confidence, social acceptance, and preparing for puberty can be common, and with Covid-19 severely limiting social opportunities, we fear that many young people with DSD won't be able to access this vital care and support.
dsdfamilies has previously run in-person group activities to help facilitate this peer support, interaction, and community building, however, the pandemic has forced all activity to pause, only isolating these children, young people, and families further.

Finding a community in which you can meet others with similar lived experiences to you can be a lifeline. By recruiting a Peer Support Therapist we can provide this much-needed support online and make tremendous progress in the care these children, young people, and families can access.

At dsdfamilies our mission is to ensure all children and young people can grow up loving and accepting their bodies, confident in themselves and their ability to socialise, and with strong familial and -when needed- medical support enabling them to thrive. We work together with families and their children, teens and young adults, and healthcare providers in the UK to raise happy, healthy, confident and well-informed young people who can speak up for the support they need and foster a community of acceptance. 

We are working with the NHS, UK and Scottish governments as well as at a European level, to ensure the rights and health needs of children, young people and families are addressed.

Why do we NEED this project?
In 2019 we developed a leading report on the DSD community - 'Listen to Us'  to capture and understand the needs of children, young people, and adults living with DSD and their families and doctors.
One of the key areas highlighted as VITAL was the need for Peer Support.

In this report, we asked young people about their experiences living with DSD, including looking to understand how they socialise and discuss their conditions with others.
When asked if they had met someone with a similar condition, only 9% said YES.
However, when asked if they would like to meet someone with a similar condition 95% said YES. 
This huge discrepancy is something that CAN and MUST be overcome.

The purpose of our project is to recruit a Peer Support Therapist to facilitate community building for young people with DSD and their families and provide a much-needed familiar face for any questions or problems that families and young people need.

Doctors cannot be the only form of support these families get. They NEED to be able to share lived experiences with people who understand, who can relate, and who can support them.

As one parent recently told us:
"The Doctors were brilliant, but they hadn't seen 'a case' like this before, so we were just in the dark. Even if those doctors could have just told us we weren't on our own it would have made everything better".
"With our son's condition we never tell anyone if we are in the hospital because of questions. It's nice to be open and just talk to people that understand".


With your help, we can revolutionise how we offer this incredibly important and life-changing support to children and young people with DSD and their families across the UK.

Please consider donating, you will genuinely transform a child's life.
Thank you!

This project successfully funded on 16th December 2020