My name is Tej Sohi, from Telford, Shropshire and I don't have ichthyosis, but my mom, Bella has ichthyosis, a type of ARCI namely Congenital Ichthyosiform Erythroderma(CIE), who you would have read about in a newsletter. I have been a volunteer, ambassador, I am now a trustee.

I have been involved with the ISG for as long as I have been alive which is almost 23 years. Of course, for many of those years I was a child and was brought to the events by my mom, who found the ISG when she was pregnant with me. So, you could say I was involved before I was even born.

Although I do not have ichthyosis, I am a carrier of the recessive gene, passed on from my mom. I have had the unique experience of growing up with a parent who has been a sufferer for all her lifetime. Ichthyosis is the “norm” in my everyday life.

I have been to every ISG conference since birth, and over the years I have got more and more involved. The earliest ISG conference memory that I have, was held inside the Old Trafford stadium in 2012, which is where my unfortunate love for Manchester United 
came from. It was important for my mom to take us to these important ISG conferences, so that my sibling and I could meet other children to build relationships with and learn about ichthyosis and the ISG community. In 2014, I attended the first ever ISG camp at a PGL in Surrey. It was a great experience being surrounded by other children who had ichthyosis and supporting them in ways they may not have experienced in their day to day lives. My sister (Simi) and I made great friends and we would always look forward to the camps every year, up until the age of 16, when sadly my experiences at camp came to an end. In order to continue to contribute, I decided to volunteer for the ISG community.

Over the years, I have been involved in fundraising by cycling in our local area, hosted an afternoon tea with the local community and walked up Snowdonia in May 2022 raising £2000. Fast forward 18 months, after progressing with my degree and career in IT, I had the 
opportunity to get involved with the conference day in Shrewsbury in September 2023. I helped organise the technical side of the event, 
to ensure the day would run smoothly. Since then, I have been working to improve some of the IT services we have running in the 
background. I hope to get involved in more projects to provide better services for ISG members through various digital outlets and help get a platform for younger members to get more involved with the ISG community.

I am passionate about the ISG community. It has always been a part of my life. Each year, I have looked forward to catching up and being around other families and friends which I would only see once a year. The ISG community has been in my life for more than 20 years and I started as a volunteer and an ambassador. As a young trustee, my aspirations are to inspire young members of the ISG community to join me to be part of the next generation to develop, inspire and grow the ISG charity.

If you are young member and feel you have some skills and want to get more involved with the ISG community. Please get in touch with me at [email protected]