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#28988 - 08/06/13 07:29 AM Australians
sophiesmum Offline

Registered: 12/11/08
Posts: 24
Loc: Coffs Harbour Australia
Hi Everyone,
I have been contacted by a journalist from Today Tonight who is interested in doing a story on Australian families dealing with Ichthyosis. If you think you might be interested in speaking with her please message me and with your permission I could pass on your email address. As for us, we have only spoken with her on the phone to give her some basic information on what its like for us and our daughter. She asked if we would be interested in speaking on camera to which I told her we were wary. I would appreciate anyone's opinion on whether we should do this.
My name is Cathy and my daughter Sophie 4 years has Lamellar Ichthyosis

#28990 - 08/07/13 11:13 PM Re: Australians [Re: sophiesmum]
Hearsay Offline


Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Yeah, she contacted me, too. She found my blog after seeing the thing on Huffington Post about the Chinese kid with lamellar last week. I told her I would be glad to do an interview (as I'm safely on the other side of the planet!), but she wanted locals. Kanga tells me it's more of a tabloid than a news network, so I can't say I blame you for being wary.
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.

email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

#28992 - 08/11/13 11:44 PM Re: Australians [Re: sophiesmum]
Kanga Offline

Registered: 12/01/11
Posts: 11
Loc: Queensland, Australia
It is a tough one, I believe that they will try to be positive as they would have little to gain from a negative story, but it will always be their version of positive.
(Jeffrey Gridley - Lamellar Ichthyosis)


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