24 November 2016





Her skin is white. 

My skin is red.



Her ichthyosis is most obvious on her back and torso. 







We both feel pain. 

I am susceptible to infections.



She doesn't feel the cold as much as me.

Kyri's feet soles are thick with skin. 

My feet aren't as thick with skin. 


My scalp has obvious scales.












Kyri sweats a little.

I don't sweat. 

I don't have eyelashes and only sparse eyebrows. 

Kyri has both eyelashes and eyebrows! So envious! 

We are both shorter than average. 



We don't look the same but we both have Ichthyosis. 




  1. 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").

  2. That was very interesting.

  3. 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.

  4. 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!




Related Posts with Thumbnails