My name is Bella Sohi and I suffer with Non-Bullous Ichthyosiform Erythroderma or Congenital Ichthyosiform Erythroderma (CIE), a form of ARCI. I am a proud mum of two young adult children namely, Tej and Simi, you might have met them over the years volunteering and 
supporting other children at the camps and who do not have the skin condition but carry the gene. They have embraced the condition and see it as the ‘Norm’ for them seeing their mum cope with the good and bad days that it brings.

I became a Trustee in 2023 although Mandy had been asking me for some time now to join and I felt I knew the charity well to get 
involved more and support our families in any way that I can.

I first learned about the ISG from Dr Celia Moss who came to see me at home when I was pregnant with my son Tej who I’ve mentioned above. I have been a member for at least 22 years. I was inspired when I attended my first family day in Birmingham, I think? Maggie helped me out here and reminded me that the Conference at Birmingham Children’s Hospital was in 2001.

It’s been so long. I didn’t know there was anyone else out there like me. I had a strange feeling when I met Mandy all those years ago and we would talk regularly about our conditions, and I became quite close to both Maggie and Mandy over time. I didn’t feel alone anymore. It was quite exciting to know that I wasn’t the only one out there with this special skin condition which connected us. I have wanted to get involved over the years and always felt inspired by the yearly family events. I feel I can support by sharing my own 
personal experiences good and bad.

I started by supporting the Family Conference 2023 as it happened on my doorstep in Shropshire and I look forward to working with the other Trustees in a more advisory role as well as connecting with families to offer support and guidance. I want to be there for 
all families as I am from an Asian background, I feel I can offer my knowledge and experience to other Asian families registered with ISG. I have experience and knowledge of working for a charity in my day job where skills are transferable, and I currently support families and individuals with all sorts of problems within the NHS. I feel I have a lot to offer our families.

Being a Trustee is important to me because I know the challenges that I have had throughout the years, and I want to help and make a difference if I can. I am always inspired after enjoying a family conference and meeting other families and its members. It is important to 
connect, and it is very rewarding if you can help others and the aim is always to make a difference.