Myself and my sister were told from birth that we suffered from eczema, 21 years later, and after finally seeing a different doctor, it was suggested we had something else, EKV. The doctor referred me to a dermatologist and following photos of me, blood tests and consultations, I was diagnosed with EKV. For me it is a really hard condition to deal with, we were bullied at school, people looked at us all of the time and I hated the winter as it made things worse for me where the flare ups were more frequent. After searching the condition online I found the Ichthyosis Support Group (ISG). The ISG had a lot of helpful information and I decided to become a member and put forward my details so I could be contacted by sufferers worldwide. I have had questions and general chats with people all around the world, including Australia. I have been able to share my experiences and advice with others and feel so proud to finally be in the knowledge of my condition and with the help of the ISG I know there are others out there!