My name is Nusrit Shaheen and I am 27 years old (2011). I have a skin condition called Harlequin ichthyosis and I live in Coventry with my Brothers and Mum. I had four other siblings who were also born with the same condition but who died as small children. I am possibly the oldest living sufferer of the condition in the UK.
The things I do to look after myself are that I have to have a bath and cream myself and make sure I have creamed well as my skin will get dry and sore. I cream about 5 to 6 times a day. I try and not let it stop me from doing what I want like my sport and going out with my friends and going to college.
The best times in my life were going to a school called Sherbourne Fields, which I spent most of my life at from when I was 3 to when I was 19 years old. Some of my favourite moments are participating in sports like the 100 metres sprint and the 200 metres. I also do javelin, swimming, shooting, table tennis and Boccia. My achievements include swimming 120 lengths for my 1500 metre badge and I have also done the Coventry fun run that was 4½ miles and did it all on foot. I didn’t need my wheelchair, which I was very pleased with as I feel this is a major achievement for someone with my disability. I have participated in the British Skin Foundation’s Walk for Skin event, and was featured in local newspapers to promote the walk in Birmingham.
I stay positive about my disability but have been through a lot when I was a kid, as I was ill quite a lot and had a few operations but I have come through the other end.
I didn’t know that there was a support group until I watched Lucy and Hannah Betts on TV and on the end of the show.
For people out there with this condition don’t let it get you down try and stay positive and look after yourself. I notice when I am out with friends or family on an outing they tend to notice that people are looking but I don’t notice this.
I was invited to appear on ITV’s daytime TV programme This Morning. I found the experience was very good. I was very nervous but I felt very welcomed by Phillip and Fern and they were really friendly and very polite. After my interview I asked if I could have a photo taken with them and have their autograph, so they gave me a signed photo but I still got to have some photos taken with them.