An information and support resource for families with children, teens and young adults who have a DSD
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dsdfamilies is an on-line information and support resource for families with children, teens and young adults who have a DSD. The website provides a service: it brings together user-friendly information on the medical management and decision-making in DSD, with psychological support, and sensitive and practical peer support.
We chose the name 'dsdfamilies' because we want to focus on care for the whole family, rather than just for the individual affected by DSD. Whilst the website is aimed at 'parents of' and 'young people with', it also offers the opportunity to talk and connect with clinicians about the medical care we like, dislike, need and would like to see improved. It also offers those not affected by DSD a down-to-earth image of these conditions: there is nothing sensationalist about this site.
DSD occurs where there has been some unusual development of the reproductive/genital system in the womb caused by genetic or hormonal factors and which can result in a mix of male and female characteristics (which may or may not be something that can be seen). This includes: complete and partial Androgen Insensitivity Syndrome (CAIS/PAIS), Swyer's Syndrome, 5-alpha reductase deficiency, MRKH, and other related conditions. It also includes the following conditions (all with dedicated support groups - see Links): Congenital Adrenal Hyperplasia, Turner Syndrome, Klinefelter, and Hypospadias. You can find a detailed description of the family of these conditions in the 'What is DSD?' pages on this website as well as on aissg.org, the 'original' support website particularly aimed at adults with AIS and related conditions.
DSD stands for Differences/Disorders of Sex Development and includes a large number of conditions, of which only few are associated with possible gender doubt and gender assignment. For many years now, there has been a discussion about the term 'Disorders' of Sex Development which was devised to replace among others 'intersex', a name that is considered a stigma but is still preferred by many affected adults. But many families reject the idea that their child is born with a 'Disorder': you cannot fix these conditions, you manage them, you adapt to them, and you come to terms with them. But many clinicians feel that the phrase 'Differences' does not adequately reflect the health concerns that may be associated with these conditions.
This is important to think about but we don't want it to distract us from our main purpose: to give you access to easy-to-understand medical information, and provide a regular flow of first-hand experience.
In time, we will add more information as it comes to us, and add the opinions of people from different countries: whether you are a parent coming to terms with these conditions in Spain or the USA, or a teen just learning about your diagnosis in the UK or in Sweden, your questions on how to express something, when to do something, etc... are likely to be pretty similar. And, in the same way that our clinicians and research teams join forces through international conferences and publications, it is time too that the parents and young people bring together the knowledge that exists within our families, national support groups, and on-line resources.
dsdfamilies is run by a small group of parent volunteers and young adults. This is not a membership organisation, and as many of our volunteers and contributors live in different countries(hence you will find variations in the spelling of words like e.g. 'mum' and 'mom'!), we recommend that you become a member of your national support group, or of a support group whose language you can easily understand. It is important that your voice is heard.
As we are parents putting this site together, we do not claim to have expertise in any of the various diagnoses possible in DSD and we don't have the background to know specific medical needs of a family or child.
If you have any medical concerns, it is important that you find a specialist to discuss your individual situation with. Usually your GP or family doctor should be able to help you find the right specialist for your family.
Sharing experiences and practical advice?
Please share with us your experiences, your successes, your worries and questions. Don't worry if your first language is not English! We will happily edit your contribution and/or translate from Spanish, Dutch, Italian, Swedish, German, and French (and we can probably find a way to translate from pretty much any other language too). We look forward to hearing from you via firstname.lastname@example.org
If you are interested in helping develop this site, please do not hesitate to contact us on email@example.com
Fundraising will be necessary to continue developing dsdfamilies. More on that later.
We need lots of advice on different issues such as on how to develop the medical and psychological side of the site, or on how best to communicate with the media and other opinion-formers in ensuring a better understanding of these conditions, how to work with other charities that look after the interests of children and young people.