I was born a Collodian baby and was later diagnosed with Lamellar ichthyosis. I became a member of the Ichthyosis Support Group (ISG) in 2011 and did not really give it much thought after that, I received my monthly news letter and Christmas cards but did not think I had much to give the group so I did not get in touch with anyone.
Then in October 2012 something changed in me, I can’t explain what, I just thought to myself I would really like to help others with my condition and make new friends so I completed a VOLUNTEER form. I was contacted shortly after that by Chairman Paul Whitehouse. After a lovely chat on the phone Paul invited me to attend the next Trustee meeting. To say I was a little nervous attending the meeting is an understatement! However, when I entered the room and started chatting to everyone I felt like I was sitting down with family. I was asked to go and have a think about whether or not I wanted to still volunteer for the ISG and come back to the next meeting. During the time in between meetings I helped out with a few tasks and loved every minute of it. At the next meeting I became a Trustee and it was one of the most proudest moments of my life.
I then attended my first family day at Blenheim Palace in 2013 and was overwhelmed by the whole day. I gained so much information, met so many new friends and did not feel alone any more. This gave me more of a passion to work hard for the ISG and help members get the most out of the group.
I work full time but give most of my spare time up helping support the ISG. I love my role within the group and I have high hopes of arranging quite a few new projects in the coming months. Watch this space!