My name is Lesley and I was born in 1978 and live in Blairgowrie, Scotland.

I was diagnosed with ichthyosis at birth and have Ichthyosis vulgaris (IV). My hands and feet are very dry and built up with hard skin, and the rest of me is also dry but it isn’t as visible. 

I feel fortunate because I’ve had ichthyosis since birth and don’t know any different. My wider family has several people who have IV, so it’s normalised for us. On a day-to-day basis I don’t give it much thought, but it is a constant baseline inconvenience and source of faff! My main symptoms are skin dryness, itching, cracks in my feet, flaky scalp, overheating, lack of sweating or dysfunctional sweating, and redness.

I’ve tried pretty much all the emollients and preparations out there.  I tried two different retinoids a few years back (when I was classed as too ancient to be at risk of pregnancy!) but I found the side effects intolerable so I didn’t pursue this. Despite all of this, I have never found anything better than our family remedy which is glycerine application after any washing. 

My routine is that I shower in the morning and apply glycerine all over, and use a skin file on my hands and feet. I use Eucerin shampoo plus scalp treatment, which helps to keep the scalp symptoms at bay. After hand washing I use either glycerine or hand cream. To date I have not participated in any clinical trials or research studies. 

Having ichthyosis has not particularly affected my mental or emotional well-being? I am fortunate to have been able to accept my skin condition for what it is; with the philosophy that I can’t do anything about it anyway, so I’m the one that chooses how I feel about it. And also that there are so many people who have worse chronic conditions to deal with. I have a tiny bit of guilt that I’ve passed the condition on to one of my three children; my 13 year old daughter, but I hope I am role modelling the fact that it’s not something that will hold her back in any way. I have hit the menopause recently, and I’ve found that the low mood and increased anxiety associated with this has sometimes made me feel more negative that usual about my skin. I’m also not sure whether perimenopause has made my skin drier – there isn’t much information out there about this area.

I am a keen runner and cyclist, and have spent some time living in Zambia, Africa. My heat intolerance has meant that I’ve had to really adapt how I exercise when it’s hot, and I now avoid races in the summer and any running at all if it’s over about 18 degrees. Just as well I live in Scotland!

The biggest challenge I have had so far has been with my pinkie toes. I am a keen runner, walker and cyclist, and have found that the cracks and bands that develop on and next to my pinkie toes can be extremely painful and debilitating.

When I was a student I applied for a job as a healthcare assistant in a hospital. I was told that someone with my skin condition couldn’t work in healthcare, by the occupational health department. I am now a consultant doctor, and my skin condition (although a pain for hand washing) has never been a barrier to anything I have wanted to achieve! 

I don’t think the current level of awareness and understanding of ichthyosis in the general public and medical community it’s great, but there are so many conditions to be aware of that I think it’s down to us to educate people as we go along, too.

My message I'd like to share with others who are newly diagnosed or struggling with ichthyosis is that having a visible condition is hard.  But it is possible, in my experience with IV anyway, to have a normal, successful, happy life and to find ways to deal with it. It’s also an excellent way of weeding out the losers who think that beauty is only skin deep!

The other thing I think people don’t talk about much is how annoying it is to choose clothes when you have IV.  The creams and potions will stain many materials, and I avoid dark tops because of the skin flakes from my scalp. I use glycerine which makes clothes soggy and unusable after one day.