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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

Ichthyosis is No Barrier to Making a Difference

Today, our friend Jeffrey “Kanga” Gridley shares his story. He has lamellar ichthyosis, a form of autosomal recessive congenital ichthyosis (ARCI) and lives in Brisbane, Australia. In addition to his Red Cross work, he is also an avid mountain climber and is currently training to climb Mt. McKinley sometime next year. He aspires to climb Mt. Everest someday.


Early this year I was deployed by the Australian Red Cross to Bundaberg (Queensland, Australia) in the wake of ex-Tropical Cyclone Oswald. Although Cyclone Oswald was a relatively minor cyclone, crossing the north Queensland coast as a category 1 cyclone, ex-Tropical Cyclone Oswald managed to drastically affect the lives of many. Dumping as much as 1000mm (39 inches) of rain in some areas in very short order, ex-Tropical Cyclone Oswald made a slow march down the eastern coast of Australia.

Oswald stayed over the Bundaberg region for about 3 days, which led to the Burnett River that flows through Bundaberg to rise to a record 9.5metres (31 feet) and cause approximately 8000 people to be evacuated from over 2000 homes. At one point, the Burnett River breeched it’s banks and took a short cut through North Bundaberg on it’s way to the sea, literally washing homes away. It is said that as the water rushed through the suburbs, it was flowing at 40 knots (74km/hr or 46mpr). The sheer power of the water turned a beautiful suburb into what appeared to be a war zone in minutes.

House washed from its footings

To make matters worse, 3 tornadoes hit the nearby coast injuring 17 people and causing damage to 150 homes. All told, over A$2.5 Billion worth of damage was done, but the psychological impacts were infinitely greater. This is where the Red Cross, along with many other community and government organisations moved into help.Queenslander - washed off its stumps

The role of the Australia Red Cross was to manage the evacuation centres, recovery centres and to provide outreach to those in need. During the two weeks that I was deployed I undertook a variety of roles including organising the logistics to move an evacuation centre and the onsite management team headquarters, targeted outreach (providing personal support) and liaising with relevant community organisations.

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 30 degrees C (85 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 (I don’t sweat), and I have had 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 latter.

In terms of my time in Bundaberg, the Red Cross were great and largely left decisions regarding my ability to fulfill 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 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.2013-2-11 Red Cross Bundaberg 003

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 visiting someone or an area 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 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, but act locally!

Red Cross Outreach July 2011 001editted

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