Simon Brown

My name is Simon Brown I am a British Armed Forces Veteran having served for 16 years in The Royal Scots Dragoon Guards; I joined straight from school in 1997 spending my whole army life in Germany. I have done two Operational Tours of Kosovo, and three Operational tours of Iraq. I left the Army in December 2013 after being made redundant. While in the army I also visited many other countries like Canada, Fiji. 

I live in Thorne now with Tammy whom I married in September 2018 and her two sons Josh and Max. Tammy, and I met in September 2015 which was when I first came to learn about Ichthyosis as Max was diagnosed with having Lamellar Ichthyosis at birth. Then in 2019 our family grew as we welcomed Louie, whom we named after The Jungle Book’s orangutan King Louie. I enjoy watching films from the Marvel Cinematic Universe my favourite character is Ironman I also have my right arm tattooed with Marvel characters. I enjoy building Lego builds I have just finished doing a 100th anniversary of Disney build. My favourite place to visit on holiday is Orlando Florida, as I am a massive Disney.

 

My first ISG meet up was in 2016 in Birmingham where I was greeted with open arms by the ISG family, since that meet up, I have been keen to learn more about Ichthyosis even though it does go over my head at times. I’m interested in the ISG as I want to help spread the word about what Ichthyosis is and what it means to me and the wider ISG Family. I would never claim to be an expert but having lived with Max for a good few years I have seen the struggles he has had to cope with and if I am able to help.

 

My role in the ISG is PGL coordinator. I am the person who books the activity weekends away for the children. We do these activity weekends so that the children can meet other children who also have Ichthyosis and make some new friends.

 

The importance of having the ISG is it’s a family who help where we can and point people in the right direction. The conferences that are organised every two years by the trustees with the help from experience medical staff be it Drs or Nurses to give us up to date information. The pharmaceutical companies who come to share their creams and emollience for all to try. The information that comes from these conferences has helped me to understand more about Ichthyosis even though quite a lot does go over my head.