Nyla, 5, suffers from a rare skin condition: ichthyosis, a disorder of skin atrophy, often colloquially known as fish scale disease. The patient’s skin grows faster than the average, so small cuts and wounds, for example, heal faster; the negative side of the condition is that the thickened skin dries out easily and needs constant hydration.
At the same time, thickened skin also blocks the sweat glands, so Nyla cannot sweat, which means there is a risk of overheating. When it is hot, she can only go out in a special ‘cooling vest’ filled with ice. It is also important that she is bathed several times a day if possible, to remove excess skin.
Fortunately, Nyla loves bathing and is overall a very happy, energetic girl who doesn’t let her illness get in the way of anything. She loves to draw and says she wants to be a painter when she grows up. She also takes great pleasure in picking out clothes and dancing; she acts as a little model, according to her parents, and is constantly making TikTok videos.
“I let her express herself really good. Unless it’s a really outrageous outfit, when I’m like ‘let me help you a little bit’. But other than that, sometimes I let her pick out what she wants and she’s very good at that. She loves the attention; she is always happy,” says Cindy, Nyla’s mother.
Nyla is very positive about her situation and her parents try to reinforce her attitude as much as possible.
“She’s able to tell everybody herself now that ‘nothing’s wrong with me, it’s just my skin’, and we make sure that we give her that confidence,” adds Cindy.