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Facebook 300

Welcome to our new look website and I hope you find the information useful.  I thought I would write a few lines regarding our Facebook Group Page, where we now have reached the milestone of 300 members.  This is a fantastic take up on a really simple way of either getting in contact with other members with FSH or asking questions about the condition or living with it day to day.  I do feel the Support Group title may put some people off joining our community, that perhaps it gives an image of us all sat crying into our coffees, but this couldn’t be farther from the truth. 

I was guilty of this preconception, until I went along to my first Support Group meet up back in 2009.  I think curiosity lead me to the group, a chance of meeting other FSH’ers and how they cope with day to day living, whether I was the only one who had issues with various day to day tasks.  Look where it brought me.  It brought me right out of my comfort zone doing things I would never have done without the support and encouragement of others who really understand what it means to have FSH.  I suppose it found me at the right time, when I was mentally prepared to face my future, but it has only been positive for me.  The Facebook online network has really been a great source of information and support, our Group is FSH-MD Support Group UK, you search it in the box on Facebook and you ask to join, we just need to confirm that you have a specific interest in FSH whether it be a carer or have FSH yourself.  Alternatively log in to Facebook in another window and click our find us on Facebook icon top left on our homepage.   It is a closed group so none of your non FSH Facebook friends can see what you have written, it is a safe place to vent, or share information or ask a question where no one else can see, only FSH’ers in the group.  I know a lot goes on behind the scenes in the group, whether it be other members making lifelong friends, even with people they have never met or are ever likely to, but we provide a platform for this to happen in a safe environment.  So if you are at all curious about who is out there, whether someone is in the same situation as you, please do not hesitate to get involved.  You can always switch us off, what have you got to lose? 

We also have an Action on FSH page on Facebook, please search and like the page.  This will keep you updated on any fundraising events and how we are getting on with our target of £10,000 to help fund research into the condition.


Liz Williams

Chair FSH-MD Support Group UK