I got to hang out with Kyri just before I went overseas. We were in Sydney for an award ceremony . It was so much fun, and we realised how much we have in common. We could not stop talking.
Kyri and I both have Ichthyosis – but different types. It seemed that our commonalities were more social than medical, though. We thought it would be fun to do a comparison blog post – to show how vastly different two types of Ichthyosis are, and also to show that one treatment does not work for all. Enjoy!
Kyri has Lamellar Ichthyosis.
I have Netherton’s Syndrome.
Her skin is white.
My skin is red.
Her skin is more resilient than mine. She tells me “my feet are very thick and tough and I can walk barefoot easily, but my skin can be fragile elsewhere.”
My skin is fragile, especially on the bottoms of my legs. It’s susceptible to infection.
Her ichthyosis is most obvious on her back and torso.
My ichthyosis is most obvious on my face – but most painful on my legs and arms.
I use medically prescribed paraffin to moisturise, all over my body twice a day, and more on my face as needed.
Kyri uses Lush Dream Cream on her body and Lush Celestial Cream on her face, and lots of lip balm because her lips crack.
Her body has a big skin shed regularly and this makes her feel better. “My skin sheds constantly, and I have four big sheds a year as the seasons change which make me feel tired and a bit cranky temporarily then better after.
When my body has a big peel (usually about once every 18 months, but now more frequently), it’s so painful.
Kyri takes accutane which is really helping her. She says accutane is wonderful because it makes life a lot less painful. She says “Accutane reduces the thickness of the scales a lot and stops the skin drying out so quickly, but makes my skin much more fragile (grazes become cuts) and susceptible to sunburn.”
I’m not on any regular drugs. I take antibiotics and painkillers occasionally.
We both feel pain.
I am susceptible to infections.
Kyri used to get infections more often than she does now, again accutane – pre accutane my skin would split open along the scale lines regularly.
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.
Kyri has very long, thick hair on her head. She also has body hair.
Mine doesn’t grow long, is thin and slow at growing. I have no body hair.
My scalp has obvious scales.
Kyri’s scalp doesn’t have many scales. She told me “my scales in my scalp were much more common pre-accutane, by the way. I’d shed everywhere a lot more, too.”
She told me she doesn’t shower frequently, because water makes her skin too sore. “My skin dries out and shrinks together causing splits, and it’s also much much more itchy for about 24 hours”, she says.
Meanwhile, in the time we spent together (3.30 pm Wednesday –
12.30 pm Thursday, I’d had two showers. My skin body would feel so uncomfortable without a shower.
Kyri woke up with her face looking like it did before she went to sleep.
I woke up with my face scaly and unable to move it.
Kyri’a hair is so long and silky. “My hair also grows very fast. I have less body hair than most women, but I have more than you”, Kyri says.
My hair is short, and breaks off. It doesn’t grow much. I have almost no body hair.
I find it it more comfortable to wear tights and long sleeves every day. This keeps me warm and protected from the elements and scratches.
Kyri can’t cover up as much as me or she would overheat. She is fine wearing short sleeves.
We both get tired easily – Kyri probably more so than me.
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 have both felt self conscious about our skin and have covered up to avoid embarrassment. We have become less self conscious as we’ve aged.
We are both very outgoing, and we talk and laugh a lot. We both love fashion and taking selfies.
Our treatments vary. What suits me doesn’t work for Kyri. When you suggest a product that you love, don’t assume it will work for everyone with ichthyosis. See my medical shaming post for more on that.
We don’t look the same but we both have Ichthyosis.
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