Note: This article is the first of a series prepared by another of our new Board members, John Lewis Sunderland, from the UK.

A European Perspective on DSDs

By John Lewis Sunderland

I know that we don’t much like these generic terms to describe our conditions, be it HS, ES, or BE. But hey, we needed a title and a shortened reference for the text.

Some of you may know that I post on HEA’s forum as well as an HS site in the UK and one in The Netherlands. I also keep in touch with adults in other countries who are affected by DSDs in one way or another, and I think I can say that we are all more or less the same when it comes to our physical and mental concerns.

HEA is special in that we have a complex posting board, allocating slots for groups; our administrator does great work there. We have a helpful chat room to guide newcomers, as well as the annual conference where there is the chance to get together and hear expert advice on areas that concern us most.

HEA also has a jewel in its crown (username “inormc”) who regularly posts up-to-date medical papers on DSDs on the forum for us to read. A recent paper was very helpful in giving me some facts that could help a new dad in the UK who had concerns about the procedure due to be carried out on his 18-month-old son. Inormc is in The Netherlands and posts for HEA in the USA, but the details are there to help someone in the UK or elsewhere. That is the essence of the closeness we can maintain, build on, and use in the future to help those who continue to find out about HEA and need our resources.

There are parents and adults with DSDs in countries not as well equipped as our own, and we have been able to request information from a friendly contact in one place to refer the information, name of contact, etc. to the inquirer. That may not be why HEA was originally set up, but it can have a pivotal role in keeping us all up to speed with new surgical techniques or new scientifically published papers that can inform and help us all in the wider world.

In the future, there might just be a chance to bring together the various help groups in Europe and further afield, not in an official way but as friends and people on the same journey.