All I have ever wanted to do with my blog and my challenges is to raise awareness for MRKH. I have specifically wanted to be as open and honest as possible to not only give a voice to those who aren’t or don’t want to share their very personal feelings and experiences whilst also realising that I can’t truly raise awareness without being as such.
Twice a year the Queen Charlotte and Chelsea Hospital (QCCH), London hold a support group meeting, the first of which is typically held in April/May and was last Saturday. This long running support group at the national centre for MRKH is always a great opportunity to catch up and meet old and new faces and is always something I enjoy going to – more so now as I know more people than I ever have with MRKH.
It is meetings like this which really highlight the value of the support network at whatever age. I don’t need support at this moment in time but I like going to provide support to others and also share experiences with those old and new. Its often the only guaranteed time I see some of my MRKH friends and feel part of the community which MRKH has both in the UK and globally.
Whilst the meetings are in London people came from all over the UK (this last meeting saw women from Northern Ireland and Scotland amongst others) showing the value that these women put on spending just a few hours in the company of those who can truly relate to what they are going through or perhaps finally meet someone else who has the same condition as them.
More than ever I feel that us MRKHers are becoming more open and comfortable about talking about MRKH all largely struck by the disappointment that this is still not widely known amongst GP’s and other medical professionals even in the UK. In more cases than not it still takes an inordinate amount of time, with very limited guidance, to get the diagnosis and reach the specialist doctors and nurses who can make this process seem infinitely less daunting and lonely than it may otherwise be.
MRKH Connect is a UK registered charity that was set up by Kelly and Janet as a way to connect MRKH women globally through a secure and safe site inspired by their own journey and quest to meet others with MRKH they found a lifelong friendship separated by the Atlantic Ocean. It has been designed as a springboard for women with MRKH to meet and make that initial connection. But more than that providing an opportunity for them to meet in person. The site also provides resources, a forum and an interactive map showing the location of all registered users and continues to raise awareness throughout the medical profession through its trustees.
There are now a lot of MRKH Facebook groups and in many ways it makes it easier than ever to talk to people but there are many that don’t use Facebook at all and also many that perhaps feel safer in a secure environment. Some use MRKH Connect to find people close to them and then use Facebook to chat further and that’s great whilst some use the financial support MRKH Connect provides to actually attend these face to face meetings to meet others in person which is even better. If you didn’t know that was possible but would like to know more then contact email@example.com for more information. You can also sign up to Register here and an admin will be in touch. Its a dynamic charity which is changing and adapting to what is an increasingly more technology driven world with lots of plans moving forward.
Why am I telling you this?
Well aside from the fact that I raise money for them through my challenges I was recently asked to be a trustee of the charity. A real honour to be honest and I was delighted to be able to say yes. I join Nuala Dixon, Clinical Nurse Specialist for MRKH from QCCH who many MRKH women will know as well as Lynn Hutton a local Nurse from the Bristol area (Kelly’s hometown), Andy Smith (Kelly’s father) who provides support in the day to day running of the charity and trustee in memoriam, Charlie Vartuli a teacher and long term friend of Kelly since her diagnosis.
I am very excited to join the team as we continue to raise awareness for MRKH and further develop MRKH Connect. For me it is another challenge which in this case doesn’t lead to horrific blisters, losing toenails and not being able to fit my feet in shoes for a good few days after an event finishes 🙂