February 3rd-7th - Mumsnet guest campaign.
This week we are delighted that Mumsnet are hosting us as their Guest Campaign.
Jo, a Mum, Healthcare Professional, and an adult with CAIS will be our guest tweeter. She will remind and encourage us to always place the child at the heart of what we do. Follow the conversation here.
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.
CIHR Transitions in Care
We are a small group of researchers reaching out to you as part of a CIHR Transitions in Care - Best and Wise Practices research study exploring life-cycle healthcare among Canadians experiencing intersex variations.
The ultimate goal of this study is to understand how we can develop timely, effective, and evidence-informed support for Canadians with intersex variations throughout the life-cycle. This study is being led by Dr. Caroline Sanders, Associate Professor in the School of Nursing at the University of Northern British Columbia. You can see who we are via http://blogs.unbc.ca/
We wish, via consultation, to gather information and advice from stakeholders about transition care and experiences. We recognize that transitioning through life's trajectories (e.g., infant to child, child to youth, youth to adult or adult to older adult and beyond) necessitates changes in the source and nature of the services provided that are challenging to navigate, creating uncertainty and exposure to known care gaps that can lead to poor yet avoidable outcomes.
To support this study, engagement sessions will be held with individuals 16 years of age or older who have experienced intersex variations and have sought healthcare services during life-cycle transitions. One engagement session will be held in Vancouver on Thursday 24th and one on Friday, October 25th, please use the survey monkey below to share a preference.
The goal of these sessions is to provide an opportunity to raise concerns and listen to opinions and experiences (e.g. by attending a workshop in person or via technology). We hope that by coming together we can begin to identify knowledge and service gaps linked to transition care for those living in urban and rural spaces.
If you are interested in talking about your healthcare experiences, please see this participant consent and information form which goes into detail about the study and what it involves, and how the data you provide will be used.
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 firstname.lastname@example.org
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.
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)
We are pleased to be sharing this statement from Caster Semenya, released February 14th 2019:
The Government Equalities Office have launched a call for evidence on the experiences of people who have variations in sex characteristics (VSC). The call for evidence is designed for VSC individuals, their parents, carers, and legal guardians, and professionals and service providers to share their views and experiences in a number of different areas including healthcare, education and support services. The call for evidence will run for 10 weeks between 17th January and 28th March and is open for anyone to respond. If you wish to share your views and respond to the call for evidence, please follow this link.