tag:blogger.com,1999:blog-1720872153813357167.post8712708447992964047..comments2024-01-16T01:42:41.699+11:00Comments on Tune into Radio Carly: Ichthyosis Awareness Month: Mason and Lisa's story. "This little boy has come into our lives and showed us that being different is ok, and that you will survive!"Carly Findlayhttp://www.blogger.com/profile/01368145710452826385noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-1720872153813357167.post-48547559864092564692014-05-03T14:18:17.940+10:002014-05-03T14:18:17.940+10:00Thanks for your comment SV? Sadly with some forms ...Thanks for your comment SV? Sadly with some forms of Ichthyosis the prognosis at birth doesn't seem very positive. There are a few stories I've shared for IAM 2013 and coming up in IAM 2014 (including mine) where doctors haven't expected the baby to live. Ichthyosis affects the skin, and in turn affects so much more - failure to thrive, the joints, infection barriers etc - and so survival in some cases can be touch and go. <br /><br />I agree though, it must be very stressful for parents :( mine were told to take me home from hospital because I wouldn't survive. I know a few other cases similar. <br /><br />Mason is so cute and his parents are amazing! Carly Findlayhttps://www.blogger.com/profile/01368145710452826385noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-49009117397272025632014-05-03T09:55:56.113+10:002014-05-03T09:55:56.113+10:00Wow, what a story. I think it is horrible that you...Wow, what a story. I think it is horrible that you were told at his birth that his skin condition was unlivable. Whilst rare, I would have thought harlequin ichthyosis is prevalent enough for doctors to recognise it and at least be a bit more proactive about prognosis. What a nightmare for you.<br /><br />Mason looks like a darling, and he is lucky to be born to such inspiring positive parents. Anonymoushttps://www.blogger.com/profile/02643842167774804433noreply@blogger.com