Anna's story: 

Having ichthyosis has affected my day to day life as I’ve never been very confident as a result of constantly getting weird looks and a lot of staring but I’ve gotten used to it. It used to really affect my self-esteem and I’d go home crying from school. I can’t say I’m the most confident now, but I’ve learnt that self-love brings confidence so I’m learning to accept having ichthyosis and focus on being happy. I am grateful for the support I have from the lovely people I have around me and the Ichthyosis Support Group (ISG)!

Like many types of ichthyosis, my skin gets very dry and I have to apply emollients and creams several times a day. When I was younger, I’d also have baths before and after school. It can be frustrating, of course, but my skin always feels so much better! In primary school I often tried to avoid putting on my creams throughout the day by hiding under the tables or in the playground from the teachers who came to help me with my cream! I didn’t want to miss out on hanging out with my friends but as I’ve grown older I’ve realised its essential and it makes me who I am and I shouldn’t be ashamed or afraid of it. After all, avoiding always gets us nowhere, like when I’d go home after school and my skin would be so dry and painful, blisters would form. We always have to face it at some point!

My ichthyosis also affects the joints in the body especially the fingers and hands. These contractures often cause my hand to clamp up and sometimes I can’t move it for several minutes. The pain can be excruciating and can lead me to not being able to finish exams within the time or well which can both affect my grades and cause me to feel helpless.

I use many creams and emollients, but there are a few I’ve been using for a few years now and always go back to after trying new ones: Eucerin UreaRepair 5%™, Balneum Plus cream™ and Proshield Plus™. (This one’s stuck with me since I was first born. Talk about being loyal!) They work wonders and are absolute lifesavers! I often get cracks and blisters in skin creases of the armpits, elbows and knees which can be so painful I can hardly walk! They tend to happen a few times a month. Sometimes I have to waddle around school because the cracks can be so deep! Proshield Plus™ and Flaminol™ come in handy when this happens.

For baths I use Hydromol Bath and Shower Emollient™ and Octenisan™ wash lotion. I try to have a bath once every other week but life can get so busy sometimes!

I’ve tried so many different creams including QV™, which I hated when I was younger and refused to use, but I have recently started using it again and found that it works for me. It doesn’t feel or give an instant sense of moisture or is refreshing on the skin straight after applying like other creams, for example Aveeno™, Eucerin UreaRepair 5%™, Balneum Plus Cream™ or CeraVe™, which took me some time to get used to, due to it’s thick texture, but it locks moisture in for much longer and I’ll wake up the next day with my skin still feeling moisturised and not the least bit dry. I’m not a great fan of how greasy it is, it’s almost like putting oil on my skin! However it works, so I’m giving it another go!

Ichthyosis can also cause thick scaling on the scalp, causing excessive dandruff which can be irritating and uncomfortable. My scalp often flakes throughout the day which can also lead to people giving me weird looks on top of my skin and it can be itchy and irritable a lot of the time. I’ve used Bell’s Coconut Oil™ since I was 5, and my parents apply it on my scalp every week.

I’ve recently started using Sebco™ which has softened the dead skin and works so well although it doesn’t smell great either! I also use a few different shampoos which have also been prescribed since I was very young. The Capasal Therapeutic Shampoo™ works so well with removing the coconut oil I’ve applied and I try to use it twice a week. Although it doesn’t smell the best (it smells like petrol!), it removes any applications or oils I’ve applied onto my scalp and also leaves my hair looking silky and feeling so soft after! I also use Nizoral Ketoconazole 2% Shampoo™ which is also great for treating dandruff and I use this every other week. On any other days, I use a normal shampoo and conditioner. 

The ISG has helped my family and I so much, from giving us information on the condition and helping my parents navigate through my early years to supporting letters for prescriptions and recommending some great creams and emollients that I’ve continued using for years. I’ve attended a few summer camps and its’s been so fun and inspiring to get to know other people also living with ichthyosis. The support from the ISG is wonderful and everyone is so kind and helpful. I’m so proud to be a part of the community and it’s been so lovely to get to know people and knowing that you’re not alone.

Living with a skin condition can have many challenges but the most important thing is to be resilient and patient with your skin, it will get better and you’re never alone!