tag:blogger.com,1999:blog-1720872153813357167.post3812250285586758050..comments2024-01-16T01:42:41.699+11:00Comments on Tune into Radio Carly: This is how two different types of Ichthyosis look, feel and are treated.Carly Findlayhttp://www.blogger.com/profile/01368145710452826385noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-1720872153813357167.post-22458289333789123832016-11-25T06:34:15.286+11:002016-11-25T06:34:15.286+11:00I love this. It's funny. I grew up knowing I h...I love this. It's funny. I grew up knowing I had ichthyosis, but none of my doctors ever mentioned it. Nobody ever told me how to care for it. Or what NOT to do. My parents were just told "ichythosis" and that was it as far as I know. As I grow older and meet more people with it (and have had increased skin issues over the last year), I find myself soaking this information up. Thanks to both of you for contributing!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-85229883451927115142016-11-24T08:22:40.458+11:002016-11-24T08:22:40.458+11:00My friends and I share this story. LI versus NS. B...My friends and I share this story. LI versus NS. But we have a lot in common. We have both worked for the same company 15 years ago, not knowing we would be spending time together for the Vereniging voor Ichthyosis Netwerken. We are working hard on the first conference in april 2017. We both are always cold. We can eat all day. I have used neotigason and she is still using it. We both cannot sweat and have experienced overheating. We cannot stop talking when we meet and we have lots of fun. Hanneke told me not to scratch so much. Silly girl.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-90141844608187937502016-11-24T08:06:49.755+11:002016-11-24T08:06:49.755+11:00That was very interesting.That was very interesting.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-75150968886450622072016-11-24T07:54:45.535+11:002016-11-24T07:54:45.535+11:00My brother was born with the same type of dwarfism...My brother was born with the same type of dwarfism i have, even though he is 5' 4" tall. What? A tall dwarf? Yes, it is possible! (I'm 4' 7").Anonymousnoreply@blogger.com