Joanna and I have been friends online for about three years now. Her story shows that having Ichthyosis doesn’t stop us from having a full life. Joanna leads such an active life – works full time, goes to pubs, and travels a lot. I’d like to go for a drink with her sometime!
“My name is Joanna, I am 36 years old and I was born with a rare skin condition called Bullous Ichthyosis Erythroderma. This generally means I get blistering to my skin, mainly to my feet and legs but as I have got older I tend to suffer less with blistering. I was my parents first child and daughter, I have 2 younger brothers and the only member of my family to have the condition, I do have a 50/50 chance of passing it on should to any children I have. My parents wanted me to go to a mainstream school and treated me as they did my brothers. I missed a lot of school due to hospitalisation when my skin was bad and received a lot of bullying, mainly in high school but I have went onto leaving school to obtaining a GNVQ Level 2 in floristry and I started working for the government in the tax department from the age of 18. It is not the career I intended to follow as I always had dreams of being a nurse, teacher, air-steward, florist, artist but I do love my job and colleagues and managers at work have been very accepting of my condition especially when I have had to take a lot of sick leave and I cannot see myself at fastly approaching 40 doing something else career wise.
I have a very good close circle of friends and have over the last few years met several people with Ichthyosis and developed good friendships with these people and been lucky to meet some through a private group on Facebook. I know when I was a child there was nobody to really confide in and talk to other than family and close friends and I often felt alone but I realise this is not the case and it is great that here in the UK we have a support group called Ichthyosis Support Group and a their is a group which a good friend of mine set up called ‘Friends of Ichthyosis‘ and that is growing every day with new members and more awareness being raised.
I was taking Neotigason tablets from the age of 7 until I was 22 which helped control my skin but I decided to come off the tablets when I wanted to start a family, I got married at the age of 22, unfortunately, the marriage ended after 18 months, I have had long term relationships since but I am currently single. I often wonder if I will ever settle down or have children, but all I can do is take each day as it comes, be grateful for my life, good family and friends.
I love to socialise and travel, my parents have lived in Spain for 12 years now and I try and visit them as often as I can as the sun and a warmer climate does help my skin, but I cannot stand to get too hot because this can make my skin blister and become sore. Friends often say I should live abroad but I am settled here in the UK and am happy to remain here for the foreseeable future.”
For Ichthyosis and appearance diversity resources, click here.