Ichthyosis Awareness Month: Jeff's story. "“Treat him like you would a child who doesn’t have ichthyosis."

Jeff has been a friend of mine for years now - I'd say we've known each other since the mid 2000s. He has Lamellar Ichthyosis. We met in Brisbane in 2007 and talk regularly. I have been pestering Jeff to share his story on my blog for ages now - and he's finally succumbed. Jeff is so driven and accomplished, and exceptionally sporty and outdoorsy. He is a great role model for young boys with ichthyosis especially. I read lots of stories about children wanting to play sports and do stuff outside and their parents and teachers aren't sure how to accommodate them in these activities. Read about how Jeff copes with being so active. I love his attitude.

"My name is Jeffrey “Kanga” Gridley and I have Lamellar Ichthyosis, but ichthyosis doesn’t make me special nor does it define me. That doesn’t mean ichthyosis hasn’t influenced my life, in fact ichthyosis has been a blessing that I will forever be grateful for.

I was born in Townsville in 1977 and to the best of my knowledge I caused quite a stir. Firstly, I decided to come into this world bum first, which led to being born via caesarean section. Secondly. I was born as a “collodion baby”, which essentially means I was born covered in a clear membrane that I shed over the first few days of my life. A couple of years later I was officially diagnosed as having Lamellar Ichthyosis via a skin biopsy. (I’ve never bothered having a genetic test)

Lamellar Ichthyosis, which affects 1:300000 – 1:600000 (depending on who you believe) is one of the 5 main types of ichthyosis (there are about 28 in total) and is towards the severe end of ichthyosis types with harlequin ichthyosis being the most severe. To put that in perspective, in 2012 there were about 300000 births in Australia, which makes Lamellar Ichthyosis a rare disease.

Ichthyosis comes from the Greek root “ichthys”, which means “fish like” and Lamellar means plate like. So without getting overly technical, having Lamellar Ichthyosis means I have plate like fish skin, which means the various bullies who called me names like “fish face” weren’t that far wrong.

 

Medically speaking the issues I face are:

• Dry skin – I use moisturising creams 2-3 times per day (as a general rule)

• Poor temperature control – overheating being a major issue since I don’t sweat

• Hearing – I have to clean out my ears constantly as they get blocked with skin, a great excuse for not hearing something

• Vision – I have a ectropion, which essentially means I can’t close my eyes fully and have had multiple surgeries to temporarily solve the problem. Unfortunately I have suffered some corneal damage that affects my vision.

• Infection risk – my skin provides me with a compromised barrier to the outside world, so from time to time I have a less than enjoyable dance with skin infections

I’m sure that all sounds like quite a handful to some, but I don’t know any different. Taking care of my skin, ears and eyes are as routine for me as brushing my teeth.

Looking back to my childhood, I received a couple of blessings early on. Firstly I was born to loving parents who would do whatever was needed to take care of me. I’m sure that it was very tough at times dealing with the unknown in the age before computers and Professor Google. Secondly, my parents received some advice from my dermatologist that I still believe is the best advice for any parent who has a child with special needs of any sort or severity. The advice was:

“Treat him like you would a child who doesn’t have ichthyosis.”

By suggesting that my parents treat me as if I didn’t have ichthyosis is about making a choice, and creating an environment that will help me to make a choice. And that choice is to not let ichthyosis define me or hold me back from anything I wish to do.

That doesn’t mean that my parents didn’t look after my medical needs, far from it. My parents did a fabulous job of getting me to the relevant specialists and ensuring that I had everything I needed to be as comfortable as possible.

What it did mean is that my parents didn’t stop me taking up a martial art (Judo), playing sport or joining Scouts. Rather than highlight the reasons why I couldn’t or shouldn’t pursue something I was keen on, my parents helped me to find solutions to the challenges ichthyosis brought me.

The best example of this was my days as a cricketer in the hot Queensland summers. Despite my inability to sweat I was encouraged to give it a go. It simply meant that I had to have somewhere to wet my shirt regularly (a bucket at the boundary or a nearby tap) and when I was lucky, a spray bottle for the umpire. I won’t pretend that it was always easy, but I have very fond memories of my time playing cricket and I am an almost fanatical cricket fan to this day.

Part of making a choice to adopt a positive attitude is accepting your circumstances, but seeing them for what they really are, which is an opportunity. Sure ichthyosis has given me challenges to overcome, but that has given me mental strength and hard won confidence that I can do whatever I put my mind to. Ichthyosis may mean that I stand out in a crowd, but there is no better networking tool. I may have seen more specialists than some have had hot dinners, but my medical issues having given me empathy.

Making the choice to find reasons I could do things has enabled me to become an educated man, succeed in my chosen careers that have taken me around the world, to play sport, enjoy the outdoors and become an active part of every community I’ve lived in.

At the beginning of this blog I said that having ichthyosis is a blessing, and that may seem strange, but ichthyosis has given me far more than it has taken away. And for that, I will be forever grateful!"

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.