30 April 2015

MEDIA RELEASE: Australia's first national Ichthyosis meet. (Peer support meet comes to life at Melbourne Zoo in May)


30 April 2015

Peer support meet comes to life at Melbourne Zoo in May

Appearance activist Carly Findlay, in partnership with the Genetic Support Network of Victoria (GSNV), will host the first official Australian Ichthyosis Meet in Melbourne on Saturday 9 May 2015, as part of Ichthyosis Awareness Month.

This event gives adults, children and families affected by Ichthyosis the chance to meet others with this rare skin condition which affects an estimated ten to twenty people in a million.

With 74 people registered to attend, including 23 who have Ichthyosis, the event has certainly been wells-received. One attendee, nine-year old Lucia, is particularly looking forward to the meet because 'it will feel awesome to be in a room with no-one staring at me'.

The organiser, Carly Findlay, explains that because Ichthyosis is such a rare condition, many people who are affected have never met anyone else who could truly understand their condition. Carly herself, as a child, hadn't met anyone else with the rare, severe genetic skin condition. 'I thought I was all alone', said Carly. Her hope is that through attending this first-ever Australian event, friendships will form and self-confidence will grow among attendees.

'People with rare conditions need social support from peers' said Carly. Peer support, through opportunities such as the Australian Ichthyosis Meet, is known to have positive effects on the health of those involved by reducing feelings of isolation and depression, improving their sense of wellbeing, and improving coping skills and behaviours.

For another attendee, 11-year old Alexander, the Australian Ichthyosis Meet is a dream come true. 'Mum has always talked about going to the United States to a conference but now we get to have one here in Australia. I will be able to ask them questions and maybe even help others by sharing how I take care of myself. I would like to ask them how they deal with people’s stares and what it's [going to be] like when I grow up', said Alexander.

The one-day event, to be held at the Melbourne Zoo, includes an informal meet and greet, time to explore the zoo as a group, and dinner. Dermatologists Professor Ingrid Winship and Dr David Orchard will also attend.

Visit carlyfindlay.blogspot.com for updates and more information before and after the event.

Media contact: Carly Findlay

Further reading: Systematic review of peer-support programs for people with cancer. Hoey LM et al. Patient Educ Couns 2008 Mar; 70(3): 315-37 (http://www.ncbi.nlm.nih.gov/pubmed/18191527)

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What is Ichthyosis?

Ichthyosis is a rare genetic or acquired skin condition affecting an estimated 10-20 individuals per million.

Ichthyosis is characterised by persistently dry, thickened, rough, fish scale skin. There are at least 20 varieties of ichthyosis, including inherited and acquired forms.

People with Ichthyosis have a normal lifespan. However those with very severe Ichthyosis may need to spend several hours each day caring for their skin so they can lead as much of a normal life as possible.

Source: http://dermnetnz.org/scaly/ichthyosis.html

About the organisers

Carly Findlay

Carly Findlay is a Melbourne-based writer, speaker and appearance activist. In 2014 Carly was named as one of Australia's 100 Women of Influence by Westpac and the Australian Financial Review.

Carly is an established online writer, winning several awards for freelance writing and blogging. She shares her story about what it's like to look different, and connects people with Ichthyosis and other visible differences through her activism. She lives a great life with Ichthyosis – enjoying travelling, seeing live music and exploring activism and support for chronic illnesses through social media. She has run the Ichthyosis Awareness Month blog project in May 2013 and 2014 - giving people affected by Ichthyosis a chance to tell their story on her blog. Carly has a Master in Communication. She blogs at carlyfindlay.blogspot.com.

Genetic Support Network of Victoria

The Genetic Support Network Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions. The Network is proud to be associated with a wide range of support groups throughout Victoria and Australia as well as peak professional bodies such as Victorian Clinical Genetics Services.

Assisting individuals and families with the 'human', non clinical side of genetic diagnosis is common place in the day to day activity of GSNV. This includes assisting people with access to services, connecting with others, education, advocacy, support and information. Visit gsnv.org.au for more information.

1 comment:

  1. We are so excited to come to this event. My 4.5yr old is interested to meet other kids with ichthyosis and find out about the different types, but mostly he's excited to see the zoo ;)


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