I have a rare, severe skin condition called Ichthyosis. I am creating a meet for others affected by this condition - Melbourne, May 2015.
When I was a child, I hadn't met anyone else with the rare, severe genetic skin condition Ichthyosis. I thought I was all alone. Ichthyosis can be medically and socially challenging, and in some cases, fatal.
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 )
Since I have been blogging , I've come to meet many, many people with Ichthyosis - many overseas and a few in Australia. And it's been wonderful. We've been able to share advice, lean on each other in times of difficulties, and offer hope and happiness to individuals and families. We also share common interests outside of our Ichthyosis. I've had wonderful experiences meeting these patients and their families.
And I wanted to give this same opportunity to Australians (and anyone who wants to travel to Australia).
I am hosting the first official Australian Ichthyosis Meet – scheduled in Melbourne for Saturday 9 May 2015, as a part of Ichthyosis Awareness Month.
This event will give adults, children and families affected by Ichthyosis the chance to meet others with this rare condition. I hope some strong friendships will form, as well boosting the self confidence of all attendees. And the event will also be showcased on my blog for Ichthyosis Awareness Month.
The day will feature three sessions: an informal meet and greet, a tour of the zoo, and a dinner for those who want to socialise.
Грант предоставил Melbourne (January 2015)