Ichthyosis is no barrier to making a difference

My name is Jeffrey “Kanga” Gridley, I have ARCI-lamellar ichthyosis and live in Brisbane, Australia. Late last year I was deployed by the Australian Red Cross to Cooktown in far north-east Australia in the wake of Tropical Cyclone Jasper. Although Cyclone Jasper was a relatively minor cyclone, crossing the north Queensland coast as a category 2 cyclone, Cyclone Jasper was the wettest cyclone in Australian history and managed to drastically affect the lives of many. One of the most affected areas was a First Nations community of Wujal Wujal, with all 300 community members being evacuated to nearby Cooktown by military aircraft after flooding destroyed all building in the town.

The role of the Australia Red Cross was to manage the evacuation centres, recovery centres and to provide outreach to those in need. I undertook a variety of roles during the 5 weeks I was deployed (December/January), but the most difficult and rewarding was managing the evacuation centre in Cooktown for 2 weeks and caring for the Wujal Wujal community until more long term accommodation could be found. We even provided Christmas dinner and had a visit from Santa with gifts for the children (donated by the wider community).

Obviously, serving the community in such circumstances can be tough for anyone, regardless of the state of your health. The environmental conditions are uncomfortable with humid days getting up above 35 degrees C (95 degrees F) and the flooded areas being full of mosquitoes, contaminated water and mud. Add to this the difficulties of dealing with a community in crisis, with many on or past the point of mental break down.

Hardly the place for someone with ichthyosis I hear you say? I won’t pretend that it is an ideal situation considering that I have issues with the heat (as many with ichthyosis do), and I have had significant eye and infection issues in the past. There is however a choice that we all have to make. We can either accept that we can’t do a great many things given the obstacles we face (whether they be Ichthyosis or not), or we can choose to push the limits and chase goals no one else thinks we can reach. Personally I choose the later.

In terms of my time in Cooktown, the Red Cross were great and largely left decisions regarding my ability to fulfil various tasks in my hands. This sometimes meant sitting in an air-conditioned vehicle for a few minutes, or tipping some water over my head. Whilst the Red Cross are wonderful, it is also about being smart in which roles I choose to accept. Obviously it wouldn’t be smart for me to be standing out in the hot sun for hours, but I can manage evacuation centres or do targeted outreach (visiting people in their homes or wherever they may be) in hot conditions by being aware of what my body is doing and what my limits are. This only possible because I have always actively sort ways to overcome the obstacles that my ichthyosis cause, and after 40+ years I have it down to a fine art. On the flip side, my Ichthyosis is actually a very effective tool at times. Like anyone who stands out in terms of appearance, people remember me. Being remembered was very helpful when speaking to someone for the second or third time. Everyone loves a familiar face, especially when in a crisis.

Likewise, most people I meet a genuinely curious about my skin and sharing my story certainly helps to break down barriers. People feel like you have shared something quite personal, which often enables people to open up about what is going on for them. Getting your foot inside the door, or inside their story a little makes it much easier to assist someone. Overall, I believe that there is a way for everyone to make a difference in the lives of others. Mother Theresa once said if you want to help the world “pick up a broom and sweep someone’s house”.

Even in the busy world we all live in, we all have time and ability to do something for others. The only choices we each have to make are whether we wish to, and how we will go about it.

As I love to say; believe universally, think globally, act locally and be kind!

What's Your Story? We'd Love to Hear It!




« Back to Meet Our Families

Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

Share This Page: