Ichthyosis

[Lublyjubly1]

Hello everyone

I have been dating my gf for just over 2 months. Shes told ne she suffers from fish scale disease. Which affects mainly her back , some parts of her legs and arms. Apparently its the mild form that shes got her specialist did tests and reckons its a genetic condition she developed in her adult life. (No other diseases like HIV etc contributed to this as thats all negative)

Has anyone on here got it? And does it get better over time? I know there isnt a cure. But how have you found it? And what do you guys do with the excess skin ? And how do you remove it?

Also if you have children , did they inherit this too? I dont have this disease.

Any info would be great.

Thank you so much.

My DS has it and has had symptoms since birth. He inherited it from me although I've never had any symptoms and my other son doesn't have it. He manages it himself now as he's 18 but when he was little we had a bath/moisturising routine. It hasn't changed at all in the last 18 years and manifests just like it always has.

Her dermatologist should have advised on a care plan to manage it so she should call and ask for advice if she's unsure. It can really vary in the severity and there are different types.

@BeBraveAndBeKind

My DS has it and has had symptoms since birth. He inherited it from me although I've never had any symptoms and my other son doesn't have it. He manages it himself now as he's 18 but when he was little we had a bath/moisturising routine. It hasn't changed at all in the last 18 years and manifests just like it always has.

Her dermatologist should have advised on a care plan to manage it so she should call and ask for advice if she's unsure. It can really vary in the severity and there are different types.

Oh thank you for your reply.

She has spoken to a dermo. Im just trying to get clued up on it for my own purpose.

She was telling me she has to wax the dead skin off every month or so. Poor woman.

Does your son live a normal happy life with it ? Do you know what his routine is if you dont mind me asking... I have just never come across this before. I have come across eczema before which my cousins have got. Would you say this mild version of ichtyosis is worse than eczma so i can kind of gage the severity of this condition.

Did any of you do genetic testing or not ?

Yes, he lives a normal life. His skin is just very dry and flaky all the time. He's showers with moisturising shower cream and uses moisturising lotion. He could probably exfoliate more and be less flaky but it doesn't bother him.

The version he has is more mild than eczema. We had genetic testing for something else and it showed up on there. I don't know if they routinely genetic test for it.

Where does pit have it if you dont mind me asking.. back legs etc?

Its just because my other child has a different condition through me. If i was to get very serious with her. Thats what scares me for our future children. Passing too many faulty genes which is unnessary.

@BeBraveAndBeKind

Yes, he lives a normal life. His skin is just very dry and flaky all the time. He's showers with moisturising shower cream and uses moisturising lotion. He could probably exfoliate more and be less flaky but it doesn't bother him.

The version he has is more mild than eczema. We had genetic testing for something else and it showed up on there. I don't know if they routinely genetic test for it.

Where does pit have it if you dont mind me asking.. back legs etc?

Its just because my other child has a different condition through me. If i was to get very serious with her. Thats what scares me for our future children. Passing too many faulty genes which is unnessary.

Arms, legs, neck and chest. It just looks like very dry skin but there are types of Ichthyosis that are a lot more severe.

I don't know if these are bought on by different genetics to the type he has. You might find some answers here: knowyourskin.britishskinfoundation.org.uk/condition/ichthyosis/

Actually I've just read that link and the type he has is X-linked Ichthyosis as I'm a carrier but have no symptoms.

[quote BeBraveAndBeKind]Arms, legs, neck and chest. It just looks like very dry skin but there are types of Ichthyosis that are a lot more severe.

I don't know if these are bought on by different genetics to the type he has. You might find some answers here: knowyourskin.britishskinfoundation.org.uk/condition/ichthyosis/[/quote]
Oh thanks for that and the link. ... theres a pic ontop of the link. Does your sons resemble that in affected areas?

And yeah just read the X version. 50 percent of.passing it on to a male. Kinda makes sense with your 2 boys.

Yes, close up that's what it looks like.

Sorry to jump on this thread. I just wondered did anyone the the family have it before your son? I am 20 weeks pregnant and been told there is a possibility baby will have this. I am awaiting genetic testing so currently trying to research as much as possible. Just wondered did anyone in your family have it knowingly before your son? Or did you know you was a carrier? It all came as a bit of a shock to me and I am unaware of any symptoms with any family members. I have only now heard of the condition to be honest.

Sorry to jump on this thread. I just wondered did anyone in your family have this before your son? I am 20 weeks pregnant and been told there is a possibility baby will have this (they picked up this from a blood test and have linked a low hormone to the possibility). I am awaiting genetic testing so currently trying to research as much as possible just to be clearer on the condition. If you don’t mind me asking was it only after birth you had this confirmed and was you aware you were a carrier beforehand? Being honest it came as a bit of a shock to me and I am unaware of any symptoms with any family members but obviously I can only go so far back. I have only now heard of the condition to be honest.