tag:blogger.com,1999:blog-1720872153813357167.post1039796300753817207..comments2024-01-16T01:42:41.699+11:00Comments on Tune into Radio Carly: Language really does matter when reporting about people living with Ichthyosis. Harper's real story. Carly Findlayhttp://www.blogger.com/profile/01368145710452826385noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-1720872153813357167.post-26116643482913211332016-09-14T08:59:06.081+10:002016-09-14T08:59:06.081+10:00Great article! It's just pure selfishness to s...Great article! It's just pure selfishness to sensationalize an article in order to create that shock factor so that more readers are drawn in without considering the human side of the story. Harper is such an Angel 😊Kaliovahttp://kaliova.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-70553687936137607982016-09-05T13:54:46.922+10:002016-09-05T13:54:46.922+10:00I believe so. We paid a few hundread dollars at th...I believe so. We paid a few hundread dollars at the the beginning of my pregnancy to scan for<br />The most commons genetic birth defects. Even in all the ulta sounds she looked normal, nothing alarming. Angiehttps://www.blogger.com/profile/10232519061968225631noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-3270003018996273002016-09-05T13:48:50.449+10:002016-09-05T13:48:50.449+10:00Thank you from Harper and her Mommy. sending lots ...Thank you from Harper and her Mommy. sending lots of ❤️. xoAngiehttps://www.blogger.com/profile/10232519061968225631noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-51707495397281479212016-09-05T13:48:37.913+10:002016-09-05T13:48:37.913+10:00Thank you from Harper and her Mommy. sending lots ...Thank you from Harper and her Mommy. sending lots of ❤️. xoAngiehttps://www.blogger.com/profile/10232519061968225631noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-62801917515584094792016-09-05T13:48:13.222+10:002016-09-05T13:48:13.222+10:00Thank you from Harper and her Mommy. sending lots ...Thank you from Harper and her Mommy. sending lots of ❤️. xoAngiehttps://www.blogger.com/profile/10232519061968225631noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-22316544098903224052016-09-05T13:47:32.087+10:002016-09-05T13:47:32.087+10:00xoxoxoxoAngiehttps://www.blogger.com/profile/10232519061968225631noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-40897496442980193952016-09-05T13:47:21.079+10:002016-09-05T13:47:21.079+10:00Thank you from Harper and her Mommy. sending lots ...Thank you from Harper and her Mommy. sending lots of ❤️. xoAngiehttps://www.blogger.com/profile/10232519061968225631noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-22365224570888098422016-09-05T13:46:29.605+10:002016-09-05T13:46:29.605+10:00Thank you from Harper and her Mommy. xoThank you from Harper and her Mommy. xoAngiehttps://www.blogger.com/profile/10232519061968225631noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-76581683594965081312016-09-05T13:45:56.721+10:002016-09-05T13:45:56.721+10:00I couldn't agree more. xoI couldn't agree more. xoAngiehttps://www.blogger.com/profile/10232519061968225631noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-65306794945357620742016-09-05T13:45:29.957+10:002016-09-05T13:45:29.957+10:00Thank you from Harper and her Mommy. xoThank you from Harper and her Mommy. xoAngiehttps://www.blogger.com/profile/10232519061968225631noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-21162378874126913692016-09-05T13:44:49.983+10:002016-09-05T13:44:49.983+10:00Thank you from Harper and her Mommy. XoThank you from Harper and her Mommy. XoAngiehttps://www.blogger.com/profile/10232519061968225631noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-92085977706896481352016-09-05T13:42:53.825+10:002016-09-05T13:42:53.825+10:00Thank you from Harper and her Mommy. XoThank you from Harper and her Mommy. XoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-74975748027463721002016-08-23T15:22:16.454+10:002016-08-23T15:22:16.454+10:00The condition can be picked up in pre natal testin...The condition can be picked up in pre natal testing, but in many instances, parents don't know their child has it until they are born, and parents don't know they carry the gene until then. So they don't know to test for it. Carly Findlayhttps://www.blogger.com/profile/01368145710452826385noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-70633090506185480122016-08-21T13:56:33.343+10:002016-08-21T13:56:33.343+10:00Is there genetic testing or prenatal screening ava...Is there genetic testing or prenatal screening available for this condition?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-6027669302910556342016-08-20T20:59:40.471+10:002016-08-20T20:59:40.471+10:00How could anyone sit there and say things like tha...How could anyone sit there and say things like that about people, especially a tiny baby 😢<br />Is this the sort of treatment she is going to encounter for the rest of her life? I hope not, but sadly it probably is. <br />Carly, people like you who are out there writing about their experiences and educating the ignorant are making the world better for the next generation. You truly are making a huge difference xxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-90968018301516436682016-08-19T13:35:28.161+10:002016-08-19T13:35:28.161+10:00Some of the language is quite shocking. Harper is...Some of the language is quite shocking. Harper is a beautiful little girl. I hope she never reads that article and sees her mother's words. It's terrible that anyone should suffer these illnesses (the constant pain alone must be horrendous), but then to endure the indignation and disrespect of people gawking or writing such negative stuff about their appearance. Just awful. Dear World, let's stop being. Stupid, insensitive and cruel.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-88574131760919922252016-08-19T12:08:28.111+10:002016-08-19T12:08:28.111+10:00Your are truly amazing! Harper is so lucky to have...Your are truly amazing! Harper is so lucky to have such amazing role models to look up to. Sending you oodles of ❤️.Angienoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-40008166855347676642016-08-19T11:19:31.697+10:002016-08-19T11:19:31.697+10:00Thank you Carly for writing about our sweet Harper...Thank you Carly for writing about our sweet Harper! This whole experience as you know, is overwhelming in so many ways. From the bottom of my heart, I so appreciate you taking the time to educate and share our story with so many. Thank you for looking out for us and guiding us on our new journey. We are blessed to have so many wonderful people that we can lean on!! I look forward to the day we can meet. Until then, big big hugs and kisses from Harper and our family!! XOXOAngiehttps://www.blogger.com/profile/10232519061968225631noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-79830290206386111172016-08-19T09:40:53.431+10:002016-08-19T09:40:53.431+10:00I'm glad you wrote this Carly!I'm glad you wrote this Carly!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-8298078788343831902016-08-19T08:56:07.074+10:002016-08-19T08:56:07.074+10:00This baby is so gorgeous. How can people write suc...This baby is so gorgeous. How can people write such trash? How can people do this to anyone let alone a baby?? It just goes to show how ableism doesn't see people with disabilities as real people.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-82390956044216189522016-08-19T08:55:16.874+10:002016-08-19T08:55:16.874+10:00She's precious & looks amazing! Keep up th...She's precious & looks amazing! Keep up the good work Carly!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-52639495862675923912016-08-19T08:28:23.829+10:002016-08-19T08:28:23.829+10:00Language really does matter when reporting about p...Language really does matter when reporting about people living with Ichthyosis." Thank you CarlyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-52659113154959341312016-08-19T08:08:33.981+10:002016-08-19T08:08:33.981+10:00The Itchyosis Community is a Better place for your...The Itchyosis Community is a Better place for your Presence.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-78113738172196915212016-08-19T08:01:24.441+10:002016-08-19T08:01:24.441+10:00I see one of the cutest babies ever! Her eyes! Sh...I see one of the cutest babies ever! Her eyes! She's beautiful. Thank you for your article addressing the original one- the language was appalling.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-82156224013182471102016-08-19T07:51:39.405+10:002016-08-19T07:51:39.405+10:00I remember going several rounds with an author las...I remember going several rounds with an author last year that had written a piece on Spina Bifida (Which she didn't have) and called it a disease. I told her that was offensive to our community. She actually argued with me before eventually seeing things correctly. :-PAnonymousnoreply@blogger.com