Dear Parent,
We welcome you to our webpages. Thank you for taking a look.
Our aim is to connect you with information and people, including other families and healthcare professionals, to support children, teens and young people affected by what doctors sometimes call dsd.
When parents learn that their child has a developmental difference they might feel upset and overwhelmed. On top of this, the information and advice that doctors give them can feel bewildering. It can initially be a lot to take in, start to understand and then navigate.
We want you to know that there are others who have been through similar feelings and that their experiences can help you with yours. In particular they can let you know that your child can be happy and healthy with a dsd diagnosis.
Please take your time to browse and absorb the information on these pages. And please let us know if there are things you want to know but can’t see answers to here. You can contact us with the information at the bottom of the page.
Facebook groups
dsdfamilies coordinates two welcoming Facebook groups to help UK-based families to connect with each other. One group is for parents of boys who were born with peno-scrotal hypospadias due to an underlying DSD. The other group is for parents of girls with XY. Our objective is to make sure you are equipped to support your growing child - whatever his or her age.
Parents often look for advice on talking to their children about how their body is developing, why they go and see doctors, or on how to walk the line between openness and privacy. All parents want to raise confident, happy and resilient young adults. We want these groups to be your safe space to ask any question you may have. We hope it will become a space where you can learn, chat, meet other families, share your parenting successes and -over time- help support those who are a little behind you on the journey.
The groups are administrated by dsdfamilies trustee Jo, who lives with a DSD, is a mum and also an NHS healthcare professional. She will be the first person you connect with when requesting to join.
How to join?
Our FB groups are private FB groups, so you can find the group by searching in Facebook, but you won't be able to see who is a member unless you are yourself a member. You can join the group by searching for the title within facebook: 'Parents of boys with DSD & Peno-Scrotal Hypospadias' or click here, and 'Parents of XY girls' can click here. You will need the group administrator(s) to approve your request to join the group, to keep it safe for all members.
If you wish to connect with other families please join our private FB groups or write an email to info@dsdfamilies.org We understand that some parents don’t have a FB account and/or don’t wish to use Facebook. You’re very welcome to send us an email and we can try to put you in touch with other families.
