How this brave mother and daughter have battled to get under the skin of rare disease
Beverley McClearn and Wendy Tate from Co Down tell Karen Ireland of the rare skin disorder, known as Snakeskin disease, which has blighted their lives and left them feeling isolated. As the only two known sufferers here, they want to raise awareness of the condition.
'Life is ruled by putting creams on and having to take daily showers'
Beverley McClearn (59), a retired care assistant, lives in Dromore with her husband Donald, who works in retail. She has two children, Wendy (39) and Ross (33). She says:
I was born with the condition Ichthyosis or Voh-Winkles Syndrome. My mother, two of her sisters and one of her brothers also had it.
It seems to be more prevalent in women in the family, though, as my sister Naomi and I were both born with it. While my daughter Wendy has it, my son Ross doesn't.
It is a very severe flaking and shredding of the skin which becomes very hard and painful at times. I have it all over my body from the neck down.
My life is ruled by putting creams on with daily morning, and sometimes evening, showers. Afterwards I have to cover my skin with a glycerine syrup and wait for it to dry.
My clothes tend to get covered in flaky skin and cream so they have to be washed every time they are worn.
I think the worst time for me was when I was at school. The other children looked at me in disdain and no-one wanted to hold my hand. They treated me like I was contagious - it was awful.
When I left school I went to work in an office and that wasn't too bad as it was a small environment.
Later I went for a job at a health trust and, at first, I was turned down as they thought I would cross-contaminate people I was working with.
I had to get a letter from my doctor confirming that my condition wasn't contagious and that it couldn't infect anyone before I could get the job - even then I had to wear special gloves.
I worked in the health trust as a care assistant and then as a manager until I took voluntary redundancy a couple of years ago.
It has been difficult living with this condition. I didn't tell Donald about it for a long time after we started going out. And it was months before I let him hold my hand as I was so self-conscious of my condition. Applying creams is something I do constantly throughout the day - even after I wash my hands or do the dishes. If I don't keep to this strict routine of applying and reapplying cream then the skin on my hands will get flaky and crack. My fingers hurt a lot and I have been put on special medication to try and alleviate the pain.
I've never been able to wear a skirt without tights as I am so conscious about the way my legs look. I would love to go swimming but I can't as my skin would flake off and I would be too embarrassed in the shower and changing rooms.
I get a lot of help from the Ichthyosis support group in England as there is always someone for me to talk to. So far, though, we've never been able to find anyone else here who has the skin condition.
Both Wendy and I see a specialist dermatologist at the Royal Victoria Hospital who has carried out a lot of genetic testing on us and discovered that the condition has its origins in Malaysia."
'People ask us if we had been badly burnt in an accident, it's frustrating'
Wendy Tate (39) from Dromore is a full-time carer for her husband Cecil, who suffers from Coeliac disease. They have two children, Grant (17) and Sophie (14). She says:
Having grown up with Ichthyosis, I've had to deal with it all my life. Caring for my skin is just routine and second nature to me now.
Like mum, the hardest time for me was in school. I felt like a freak at times and really isolated as no-one ever wanted to be my partner and hold my hand in a circle.
I always ended up partnering the teacher in primary school and things just got worse in high school. Even the teachers just knew me as the girl with the skin problem.
It really hurt and the other children would call me names behind my back, which was really cruel. They said my hands were dirty, so I felt very insecure at school and had low self-esteem.
If you have a limp, a hearing impairment or sight disorder people recognise it - but ours is a condition that is mainly unseen, yet it affects most of our bodies.
Mum and I tend to cover up as much as possible and wear gloves in the winter so people don't notice it - but we are living with this condition every day.
People ask if we were badly burnt in an accident, or do we have very dry skin - 'have you ever tried E45?' It gets very frustrating.
Despite this, though, mum and I are both very grateful that we are healthy and we know that there are others who are a lot worse off than we are with more serious conditions. However, we would like to see more awareness about this skin disease.
People do stare at our hands and it is like an elephant in the room with new people, so I just say outright that I have a rare skin disorder, then they know what it is.
We can't do things like having a mother and daughter spa day as there is no way we could get in the Jacuzzi or steam room - our skin would end up like a prune and start to flake off.
I never go out shopping and try clothes on as it's too embarrassing, so I just bring the clothes home to try on.
Bathing twice a day and applying cream is a daily and time consuming part of my life. I can't wear skirts without tights as I am too conscious of my legs and I always wear long T-shirts as my elbows are particularly bad.
To protect my clothes from the ointment I wear leggings and a long T-shirt underneath.
I was very blessed that none of my children were born with the condition which can be inherited. I didn't want them to go through what I did at school.
Despite those experiences when I was younger, it has made me the person I am today. Now I know what it is like to feel marginalised and different so while my schooldays weren't always the best that experience has enabled me to do voluntary work with young people in the community who may feel this way too - albeit for different reasons.
I wish there was more support and awareness here for people like mum and I who have Ichthyosis - but we haven't been able to find any other families with it."
The facts behind Ichthyosis
- Ichthyosis comes from the Greek word meaning 'fish' and describes a group of conditions in which the skin is dry and scaly
- Lots of people have dry skin conditions (such as eczema or psoriasis) but they tend to be patchy and they come and go
- By contrast, in Ichthyosis the scaling is continuous and usually affects the whole body
- Most types are congenital, meaning that they are present at birth, and inherited, meaning that they result from genetic changes, so they may run in families
- For further information log on to www.ichthyosis.co.uk