Empower-DSD is a clinical research project funded by the German Government. It brings together 5 DSD Clinics in Germany (Berlin, Lübeck, Münster, Ulm, Bochum). It started in 2019 and this is the last event within the program.
The workshop is still free of charge and travel bursaries are available to support the interested families if they travel from outside Berlin.
Empower-DSD provides information and psychological support workshops modelled on those used in other chronic conditions (e.g. asthma). They provide workshops for the following diagnoses: Turner syndrome, Klinefelter syndrome, MRKH, CAH Classic, CAH Late onset, 46 XX/46 XY DSD.
Workshops typically have 6 – 8 participants and different workshops are available for:
- Children aged 8-13
- Young people 14-17
- Young people 18-24
The workshop groups are homogenous in terms of age and diagnosis and they typically take place over a weekend (Friday 1-6pm to Sat 9-3) with lots of breaks for socialising in between.
Modules of the Information and psychological support workshops are:
- Day 1:
- Module 1: Introduction/ ‘housekeeping’/ general intro
- Module 2: Biology basics
- Module 3: Medical therapy/care
- Module 4: Stress Management (only for CAH)
- Day 2:
- Module 5: Psychological Aspects: talking to others, talking to child and friends, when to talk and tell etc
- Module 6: Take home messages; lessons learned; post-intervention evaluation
The previous MRKH workshops were well received and highly appreciated by the young women taking part.
We include a testimonial from Frieda, who attended the first one:
“We were a small group with 9 wonderful MRKH people. The meeting started on a Friday around noon and ended around evening. On Saturday we met early in the morning and finished in the afternoon. On Friday, the speakers were a paediatrician, a psychologist and “our” paediatric and adolescent gynaecologist, who diagnosed our MRKH. The paediatrician told us a little about the cause of MRKH, a little about hormones and MRKH and “our” paediatrician and adolescent gynaecologist explained the anatomy again, told us about different surgical techniques, about the stretching method and also a lot about the possibilities of having children.
First we all introduced ourselves. Then we watched an MRKH documentary by TruDoku with another MRKH sufferer (Janina Brandes) and then there were the various lectures by our speakers. They were not boring lectures, but they were more interactive with a lot of space for exchange. A space where everyone could open up and allow emotions. On Saturday, two other wonderful MRKH people (Sophie and Nellie) joined us via video and we could share our questions, fears, etc. with them. The rest of the day on Saturday there was plenty of time and space for sharing. The psychologist had prepared questions which we could answer and thus get into the exchange. There were also phases where we exchanged in small groups. The questions dealt with our environment and the diagnosis, our sex life, problems, desire to have children and many other topics.
It was two wonderful days with wonderful people. I was really happy that we had the opportunity to get to know such wonderful MRKH people and that I was able to take away some of their fears and help them with my experiences”
The next MRKH workshop will take place 26th and 27th August 2022 in Berlin at Charité.
As this is a research project, participation is free of charge, but participants agree to take part in a survey.
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