We are very pleased to share with you the Notepad resource which was developed by dsdfamilies to be used to support young people in clinic to ask the questions they may have.
The resource has 5 elements, the Notepad itself, plus 4 supporting resources.
The Notepad was designed to begin to equip young people with the tools to ask the questions they really have. These questions have been developed by young people living with DSD working with dsdfamilies. They are intended to start a conversation – and to encourage young people to voice their own concerns. We know from research that young people attending a DSD clinic often do not get the chance to ask the questions that matter to them. This project is an attempt to improve this experience through a set of practical tools.
You can find out more about the project and download the resources from the Notepad resource page.
This project was only possible through the valuable input and efforts of Gabrielle, Esme, Jo, Claire, Nina Callens, Dr Cara Williams, Caroline Sanders, Ellie Magritte and Megan Usipuik.
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You can reach dsdfamilies via WhatsApp/phone/text, as well as by email. Please contact us at info@dsdfamilies.org. We are a very small team but we will get back to you as soon as possible.
We welcome enquiries from families and young people about peer support, from healthcare professionals around best care, and from media and third parties, especially those who have contact with children and young people with DSD, regarding training around differences of sex development.
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We're delighted to add the translation of our 'First days - when your baby is born with genitals that look different' booklet in Portuguese/Brazilian, produced by the DSD Team in Sao Paolo. (Click on the text link or image on the right ot view and download the file). This is in addition to the many different translations of this booklet. You can view them all at our resources page.
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How mainstream is this, fundraising via Amazon? To enable dsdfamilies to have the capacity to plan regular family days (online, face-to-face, local, regional etc,) to develop resources, generally to maintain the website and develop further we need funding. As an organisation we are applying to funding bodies but we also know that many other charities rely on the 'marathon and skydiving events' that their supporters take part in. That is not something we do as parents/families of children with different sex development!
However, if you wish to support us, here's a (small) way to do it. By going through this link, Amazon will donate 0.5% of your Amazon purchases to dsdfamilies. It's not a lot, but over the year, and in higher numbers, it can add up, and it's totally annonymous. Again to be honest, just think how mainstream...I could not have imagined this 10 years ago....
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dsdfamilies helps to run 2 welcoming Facebook groups to help families connect. One group is for parents of boys who were born with peno-scrotal hypospadias due to an underlying DSD. The other 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. This means you can find the group by searching Facebook, but membership is private. You can join by searching for the title of the group: Parents of boys with DSD & Peno-Scrotal Hypospadias or click here, and Parents of XY girls can click here.
If you wish to connect with other families please join our private FB groups or write an email to info@dsdfamilies.org
On 6 March 2020, Ellie Magritte and Julie Alderson attended the annual conference of the Scottish DSD Managed Clinical Network in Edinburgh. The entire day focused on the urgent need for investment in psychological care, with Julie giving the key-note together with a young woman and her husband who shared their journey about learning about MRKH and their desire to have a family. We were delighted to meet a senior representative from NHS Scotland to discuss the lack of psychological care provision in Scotland.
The Story of Sex Development
We are delighted to launch our new booklet: The Story of Sex Development. Anyone can map their own sex development using our Story.
This true Story breaks down sex development in small steps. A young person learning about his or her body, or the parents of a little baby with genitals that look different can easily trace development from tiny embryo to birth. Doctors and healthcare professionals, you can use this booklet too.
The Scotsman - Children with different sex development need more help – Ellie Magritte
Different sex development (DSD) is an umbrella term for the 40 or so atypical pathways an embryo can take towards becoming a baby boy or girl. DSD affects how a body can make or respond to sex hormones. This in turn can affect fertility or genital appearance...
Read the full article here.
Mumsnet - ‘Differences in sex development’ (DSD) – what does it mean?
Kate Davies, Senior Lecturer at London South Bank University and Trustee for the charity and patient support group dsdfamilies, explains what Differences in Sex Development means. Read the full article here.
Scottish Differences of Sex Development Network Family Day—Saturday 8th June 2019 Are you a young person or a parent of a young person with differences of sex development? Would you like to find out more from specialists in a friendly atmosphere, away from hospital? Would you like to meet and talk to other people who may have similar experiences? Date Saturday 8th June 2019 Time 10am—2pm Venue The Studio, Glasgow Register www.sdsd.scot.nhs.uk/sdsd-events
See further information here.
‘Listen to us’ is a unique report capturing the voices of nearly 200 children, young people and adults living with different sex development and their families.
Their message stands out for its simplicity: we need good and thoughtful healthcare; we need accessible and can-do information about different sex development and what that means for our newborns, for our children, for ourselves and our lives ahead; we need peers and social support; we need help to talk about this: words that can explain it and a society that hasn’t already made up its mind.
This report underpins the Action and Fundraising plan for dsdfamilies for 2019-2022. If you’re interested in becoming a part of the dsdfamilies Team let us know what skill(s) you can contribute, what difference you can make.
If you can fundraise for dsdfamilies, please contact Ivy via info@dsdfamilies.org
How many?
We get a lot of questions around how many people 'actually' have different sex development. That's because some people use a specific definition and others a 'non-medical' one. Have a have a listen to the More or Less programme (first 7 minutes) and make up your own mind.
And for more detail still, have a look at our Overview of different sex development.
March 2019
Trustee Ellie Magritte and chair of dsdfamilies Julie Alderson spoke at a medical conference for paediatric endocrinologists in Stratford on 1 March. Julie spoke about supporting children with genital difference and findings from a study she coordinated, and Ellie introduced the 'Story of Sex Development', a visual and easy-to-understand way to explain (a)typical sex development. (see picture opposite from the event)
