Sarah is a mother of a little boy with Ichthyosis. Her family has X-linked Ichthyosis – where males display the symptoms.
As she writes, Ichthyosis is a big learning curve with her children, even when it’s been a big part of Sarah’s life.
“Ichthyosis has always been in my life. My family has X-linked Ichthyosis. I remember asking my dad a lot of questions. He would tell me how the women of the family were the carriers and that the males were the ones who dissplayed the symptoms. He didn’t find out what it was exactly till he was older. Still in my opinion not much is known about it.
(Sarah’s Dad with her son.)
Now that I’m older I am learning more about it everyday. I had my handsome baby boy Tommy Joe in April 2013. When he was born he had issues with breathing and feeding. He had jaundice really bad. I also noticed his skin looked like it had a plastic film over it. As I would learn later its called collodion. I knew something wasn’t right. He was also a lot smaller than my daughter was. after the first day I would start to notice some peeling. I knew then what was going on.
It been rough so far but I feel things will get easier. He turned a year in April. He looks like he is about 6 months. He has full on scales on face arms legs and stomach. He has problems with his eyes drying out as well because he can’t close them all the way. He also has developmental delays. He still has issues sitting up. And isn’t crawling yet. The doctor says he might have to have therapy.
I remember my dad telling me his youngest brother didn’t walk till he was 3. I’m still hopeful though. I think the hardest thing is explaining it to family members. This is all new to my husband and he is having a hard time dealing with it all. But either way he says he is still his little boy.”
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.