Life with a chronic illness

"My mum is wonderful. She's been my carer, my guide" ... Carly Findlay, pictured here as a child with her mum, Jeanette.
"My mum is wonderful. She's been my carer, my guide" ... Carly Findlay, pictured here as a child with her mum, Jeanette. 

People have asked me if I blame my parents for passing on a genetic illness. Of course I don't. My parents both carry the recessive gene, and they didn't know they were carriers until they had genetic testing when I was 10 years old. They did the absolute best they could raising an unexpectedly sick baby, on the other side of the world away from both of their families. 

I have ichthyosis form erythroderma. It means scaly red skin. I was born with it and it will probably never be cured. I also have another variation of ichthyosis called Netherton's Syndrome, which affects my hair. 

Basically, I am red and scaly. My skin gets itchy and sore. My face is the reddest part of my body because it is exposed to the elements. I get infections easily - generally on my legs, but sometimes on my face. Sometimes my infections result in hospital stays where I am bandaged up like a mummy. Infections can make me very sore.

My skin condition affects lots of other things in my body. My eyes, ears, digestive system, temperature and metabolism are all affected to different degrees.

Immediate symptoms ... Carly as a baby.
Immediate symptoms ... Carly as a baby. 

As well as being medically challenging, there are social implications, with lots of stares, comments and jokes about my appearance each day. But it has been a blessing. It's afforded me many opportunities including the chance to tell my story in various publications, on stages and as an academic at the University of Western England. I don't resent having ichthyosis.

My mum is wonderful. She's been my carer, my guide and my best friend. I’m continually thankful to her and Dad for giving me such a wonderful life and for never stopping me from doing anything. I can't imagine what it would have been like for my parents to have their life changed so dramatically after I was born. 

Here’s what my mum, Jeanette, has to say about my ichthyosis. 

Jeanette's story

My pregnancy with Carly was very normal, with no morning sickness. I had the normal check-ups with the gynaecologist and everything was normal. But when she was born three weeks early, Carly was red all over, and a dermatologist was immediately called. He diagnosed the redness as ichthyosis erythroderma. He told us that by the time she left hospital it would clear. But this didn’t happen – in fact, she got worse.

We were frantic with worry about Carly, and as we’d just immigrated to Australia from South Africa we had no family or friends nearby. It was hard to comprehend what was happening.

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At three weeks Carly was admitted to The Royal Children’s Hospital in Melbourne. She stayed in the intensive care unit for three months. The day she was supposed to be discharged she had a seizure, so she stayed for another month. The cause of the seizure was unknown. By the time she was discharged she was half her birth weight and the doctors didn’t have much hope for her survival.

We did a lot of questioning as to why and how Carly could have been born with ichthyosis. Our guilt was natural but hard to cope with.

Our main aim was to get Carly home from hospital and get into a routine. We eventually returned home to Albury, a four-hour drive away, with a sinking feeling, but we decided to make the most of the time we had with her. Life was very slow. Each day was a bonus and we are still making the most of our time with her now.

Best friends ... Carly and her mum Jeanette now.
Best friends ... Carly and her mum Jeanette now. 

Carly had lots and lots of visits and stays at The Royal Children’s Hospital and our local hospital. The medical staff and doctors at both hospitals were fantastic – and still are now, with Carly attending the Royal Melbourne Hospital.

My biggest concern was how Carly would cope growing up in a small town. We moved to a place called Walla Walla, north of Albury. I took Carly to the local preschool where she had a great time, but kids were wary of her even at the age of three. I made some great friends, and they supported us and were always there when I felt down or I needed them to babysit.

I used to get very angry at people staring and making snide remarks. As Carly grew older she told me to ignore them, as she can cope and handle people her way without getting angry. But I found people very ignorant, and I still do.

Primary school was very average, although the staff were supportive. Carly didn’t have close friends and I always told her high school would be better. It was a bit better. The first three years were hard and Carly tried very hard to fit in.

Carly applied for an after-school job at a department store. I worried about how she would cope with the customers, especially young kids, teenagers or rude/ignorant people, but she took it in her stride.

Then she completed her HSC and went on to university.

I worried about her going out into the big wide world, but she showed us that she was confident and mature enough to move. Now I don’t have to worry too much about how she will cope.

Here’s my advice for parents of children with ichthyosis (or any chronic illness or disability):

  • Take time out for yourself. There will always be someone offering to babysit.
  • Join a mother's group. Interact with children and parents.
  • Don't be afraid to go out. People will stare, children will ask questions. Answer them politely and just ignore rude people.
  • Feel good about yourself. If you’re depressed it will rub off.
  • When help is offered, take it: even a 15-minute break means sanity.
  • Take things one day at a time. When Carly was a baby I worried about how she'd go at school. Her paediatrician encouraged us just to focus on the present day and to cherish every moment spent with Carly. You can't change the future by worrying about it.

Carly has made a video that gives advice to young sufferers of ichthyosis - you can watch it on YouTube

Carly Findlay is a writer, speaker community TV presenter and appearance activist. She blogs at carlyfindlay.blogspot.com. Carly's Mum's story was a part of her Ichthyosis Awareness Month project throughout May.