Pityriasis Rubra Pilaris

I had 3 spots which appeared on my chest. GP thought it was a chest infection. Within 2 weeks my entire body was covered. I was hospitalised for a month. Lost my entire skin from head to toe. Lost my eye lashes body hair, etc. Finger nails changed shape and colour and very painful. I have to open things with my teeth.

I have phototherapy for the palms of my feet and soles of my hands. The psychological pain has been very tough as my hospital and my own GP never came across this condition and not having that support took its toll on me. Life has changed a lot for me. Physically I have changed but I do know that I am much better.

Sometimes I don't feel like doing anything. I joined the PRP support group which has been so helpful, listening to other people’s stories and knowing that I am not alone and that there are others worst off than I am.

I wish I can meet people in London who are suffering with the samecondition.