The last day of the conference time had come for the MRKH organizations Presentations. Not everyone had the opportunity to be present in Poland and sent us a video presentation or a written presentation instead.
First woman out was me to present MRKH Norway and our work, this was delayed when a Polish magazine that has followed the conference wanted to do an interview. They’re going to make a special supplement on the conference with interviews from professionals and organizations, we are looking forward to seeing the end result! You can follow them on Facebook if u like !
MRKH in Norway aim to improve the treatment and follow-up for MRKH girls in Norway. We provide support as best we can to those who need someone to talk to, need advice or anything else they may need help or support of in relation to MRKH. We also provide support to parents of girls with MRKH.
We have a separate closed Facebook group for girls in Scandinavia, and we are available by phone and email 24/7.
We also have a sister page called www.mrkhquotes.com for daily encouraging quotes.
In addition we are actively in social media like Twitter, Facebook, Instagram and website to spread awareness and knowledge of MRKH syndrome – here we work globally.
See our website mrkhnorge.no for more information about us and our work.
Pinja Pulkamo presented Finland, she first showed us this great video that she has been a part of in debate on the legalization of Surrogacy.
Furthermore, she told a little about treatment in Finland, they are only offered dilation treatment, and in generally there is little knowledge among doctors about the syndrome. Finland has as of today no registered organization.
Next woman presentator was Geraldine who presented the French organization Asso-MRKH.
She told us about their work to spread awareness and increase knowledge about MRKH. They have their own closed forum for paying members, website with information and they are on stand in various occasions.
They are working to provide girls with the MRKH syndrome support and give good advices. And the efforts to increase knowledge and awareness among physicians, gynecologists and other health professionals.
Visit their website – Asso-MRKH for more information
Italy had a short video presentation. The organization ANIMrkhs has been around for about two years. As the other organizations Italy focuses on spreading knowledge about the syndrome and to provide support to girls affected. Italy too has its own support group on Facebook where girls can share experiences and ask others for advice.
Italy can be contacted by one of this webpage www.animrkhs-onlus.org or by following:
Starting from a facebook pagina, Mexico is registrating as an organisation. They are open to Spanish-speaking women from outside Mexico as well. Besides that online discussion place, they raise awareness, through interview on TV, and they distributed folders in the street to 200 person, who were surprised or chocked about the syndrome. Treatment is only by surgery in the capital, by a plastic surgeon.
This is Mexico on a news show in 2012
Video presentaiton: Spain, Barcelona’s organization MRKH Amar (Amar means love) was started in 2009. Organization focuses on
spreading knowledge and awareness about the MRKH syndrome and to provide emotional support to girls who are affected.
Also they work on the following :
- Creating network with professionals
- Keeping lectures, debates, publications etc. to spread the knowledge about MRKH
- Having regular meetings with patients and professionals
- Support and information to family and friends of girls with MRKH
You can read more about the organization’s work here
Written presentation: Amazing You MRKH Africa had a great presentation, this is also a newly registered organization whose goals are to improve knowledge and awareness about MRKH in Africa, as well as provide support to girls who are affected. Here the founder of the organization’s shared her touching story about how it is to live with the syndrome in Africa. We look forward to follow their work.
They have their own group on Facebook where MRKH girls can ask to become a member.
Finally, I would say it was absolutely fantastic and amazing to meet so many girls at once who all have one thing in common, MRKH.
There were several late nights where we shared our inner thoughts and feelings. And to be met with an understanding that only we who are affected know was incredibly strong. I think most of us felt that we became stronger and suddenly did not feel so alone anymore. We’re all normal girls, we laughed, we cried, we comforted we hugged. It was simply magical!
For some girls, this was the first time they met others who have MRKH, and for some the first time they opened up on how they actually feel about it. What thoughts and feelings they are struggling with. Things they have never been able to share with others. I know that for some it was a «life changing» experience, and that in itself was worth the whole conference.
Thank you so much to everyone who participated, you were all helping to make this the great and special experience it was! New friendships where made, and we will definitely meet again!
Now we will soon start planning the 2nd International meeting on MRKH and I can not wait! Hope to see many of you who took part this time and many more next time!!
A big thank you I will also give to all of the professionals who participated and shared their knowledge and experiences, and thank you for using your time and effort to work for girls with MRKH!
And finally an extra big thank you to Karina who was the one who initiated the meeting, you are an amazing beautiful girl !
Here you have some photos from the conference and some of the great people who participated!
(Not all participants appear since not everyone is comfortable with appearing in pictures publicly, something we of course respect 100%!)