My name is Wendy and I have lived with Ichthyosis vulgaris all my life. Within hours of being born my skin dried out and started peeling, my Mother told me that the skin on my hands peeled off as if I were wearing a pair of gloves, shedding my skin like a snake in the perfect shape of my fingers. I don’t know how I ended up with ichthyosis as we were not aware of anyone else in the family with this condition.
The doctors kept telling us that I would “grow out of it” by the time I was 7 years old, then when I was 7 they told me I would “grow out of it” by the time I was 14 – well they were wrong, I am now 41 and still have dry, flaky, tight, cracked, peeling, itchy & sore skin, and at times it looks like crazy paving! We tried many different creams and emollients, some of which made me sting and burn, I even went to Great Ormond Street Homeopathy Department to try out natural treatments, but I didn’t find they helped at all. In the end we tried finding different creams by ourselves and with the help of our doctor instead of dermatologists which seemed to suit my skin better.
I had very “rosy” red cheeks as a child, caused by over-prescribed use of steroid creams from the doctor and over-heating because of not being able to sweat. Other children at school used to bully me because of my skin and because I needed to visit the school nurse during the day to have cream re-applied, some children even told me I had ruined the class photo’s because of my red cheeks! Bullying by other children throughout my school life made me very upset and I would crawl deep into my own shell and I became increasingly quiet and shy. I would get comments on how I had “horrible dandruff”, “don’t come near me because I don’t want to catch it” and “you’re stupid for getting sunburnt” – even today I won’t wear dark colours very often because it shows off my flaky skin.
I still can’t sweat much, apart from on my hands, feet and bottom, I get overheated very easily which causes me to go bright red and my hands & feet to swell up – I can even hear my blood pumping in my ears and feel if pumping hard through my veins.
I know my ichthyosis isn’t as bad as a lot of other sufferers, and it does seem to have got a lot better as I have got older, maybe this is because I have found a combination of creams that work for me at the moment – but then I do still get bad days where I can’t stop my skin drying out and flaking no matter how much cream I apply which still gets me down now and again, but I have great support from my boyfriend which is a real help and great comfort to know he understands and is there for me with big hugs when I need them.
About 10 years or more ago I found the Ichthyosis Support Group via an internet search and joined the group immediately – it was amazing to find out that there were so many other people in the world with Icthyosis, and so many different types! Reading about other people’s stories about living with ichthyosis was a real help. I learned a lot more about ichthyosis from the ISG than I ever had from doctors and I really appreciate their hard work in creating the monthly newsletters, sharing information on current research and new treatments available.
This was the first time I was able to attend a conference without other commitments getting in the way. I didn’t know what to expect, but everyone made me feel so welcome and it was amazing to see so many people with Ichthyosis in one place. I felt overwhelmed as now I definitely knew I wasn’t alone and there really were other people like me – the proof was there in that room! There were so many people from different walks of life, with many different types of ichthyosis, all pulling together to share their stories and offering advice on creams, washes and lotions. Thank you ISG for bringing us all together and helping us find new treatments to help ease our suffereing and helping us to educate other people to make them more aware of our condition!