Siblings with or without EHK

Posted by: kristi3360

Siblings with or without EHK - 01/30/04 06:04 AM

I have a son, 5, with Ichthyosis Hystrix and it is a form of EHK. I do not have EHK nor does my husband. Hayden is the first. He is our only child and we were wondering about the posibility of having more children with it. My question is for any of you that have EHK or have family members with EHK. If you have siblings or children do they also have this or are you the only one with it. I feel like Hayden's is a spontaneous mutation. I am just wondering about other's experiences with it in your families. Hope to hear back soon, Thank you, Kristi Hawk

Son,Hayden, born w/Ichthyosis Hystrix--born 1-9-99
Posted by: pauline5

Re: Siblings with or without EHK - 01/30/04 11:53 AM

Hi Kristi

I am one of those people who has EHK, and there is absolutely no trace of any family history with it, and my siblings are fine....So I have mutated this gene all on my own .... However, apparently if I was to have children of my own, I have a 50/50% chance of passing it on

Regards Pauline.
Posted by: Deidra

Re: Siblings with or without EHK - 01/30/04 12:06 PM

Hello,I am sure there are people out there who will address the genetics of the issue. I just wanted to tell you, I have two children. My oldest does not have EHK and my youngest does. As far as we know, no one else in the family is affected. We have not had any genetic testing done at this time because we weren't planning on having any other children anyway. I imagine some day, Evan will want to know more and we will do what needs done then.
Posted by: Anonymous

Re: Siblings with or without EHK - 01/30/04 02:34 PM

Like Pauline I am also the first in my family to have EHK. I have 3 older sisters that do not have it. My children also will have a 50/50 chance of having it. I know a woman with EHK who has 4 children, only one of her kids had EHK passed on to them. I met another woman who didn't have EHK, had two uneffected kids, then had one child with EHK, then had another that was uneffected. I'd say the chances of your next baby having EHK are extremely rare if not impossible. You might want to have your genes tested but i think it will be a waste of time and money.
Posted by: kristi3360

Re: Siblings with or without EHK - 01/30/04 03:25 PM

Thank you all for your quick responses. Keith, thank you for remembering other cases that you could share with me. We are excited to have more children regardless if they will have EHK or not. I just wanted to get a little idea of what we might expect. I also have read many postings that you have submitted over the past 4 years and I want you to know that I feel better most always. Since I have a boy with this, one of my concerns is for his future with girls and how he may feel. You have been very inspiring. Isn't that a crazy thing to worry over!?! Afterall, he is only FIVE! Thanks for the birthday wish! Kristi
Posted by: PrayerKaren

Re: Siblings with or without EHK - 04/07/05 04:47 AM

Hi Everyone,

I've not been on in a long time and see that there are a lot of new names out here. Wow it's great to see. Anyway, I come from three generations of EHK, my mother has it, I have it and my daughter has it.

I've never really noticed about the peeling after a fever persay, however, I have noticed in all three of us, that if we get skin infections and blister, afterwards our skin will peel off in those areas and become smooth underneath.

I am 37 and my daughter is 18, we have also monitored our skin and the different phases it goes through and have noticed that during seasonal changes our skin will get dramatically worse while the temperatures are up and down and going through the actual change from one season to the next, however, once it evens out and stays consistant, so does our skin and then it clears up.

Another thing we've noticed, is about three years ago we moved back to CA from living in Arkansas for nine years and have noticed that since being here we've not anywhere near the skin infections we got while living in Arkansas. I don't know if it's because it's dryer out here as to where it's extremly humid in AR but the whole nine years we lived there we battled with some serious skin infections on a regular basis. I remember times we would no sooner get rid of one infection and two or three days later here we'd go again.

As for the rash, the only thing I can think of is perhaps a contact rash caused by coming in contact with an irritant or perhaps an allergic reaction. If your certain it's not the measels that could be it. Another thing, when we get scabies it affects our skin far different than it does most people. With us, it will cause an itchy rash all over and those spots will turn into little blisters. The doctors don't recognise it because it's so different, but if you've tried everything you can think of such as changing laundry soap, and bar soap that you shower with etc. and you continue to get this terrible rash, chances are it's scabies. And unfortunately scabies is extremely contagious especially from children and they only have to be near someone who has it in order to contract it. So keep this in mind.

Good luck,
Karen Sawyer
Posted by: Chunner

Re: Siblings with or without EHK - 04/09/05 02:24 AM

Christian is our fourth child and the only one with EHK. There is no known history of it in either of our families. Our doctor calls him a spontaneous icythyosis. I understand your concern!

Posted by: AngV

Re: Siblings with or without EHK - 04/10/05 04:02 PM

Hi, I am 31 and have EHK - I was the only person in my family affected, I have two younger brothers and one younger sister who are not affected. I have three sons now and my youngest son does have it. But as far as I can remember since I was the spontanious mutation -the chance of my siblings getting it were slim to none, and they did not get it. My chances of passing it on were 50/50 and my third son got it so his chances will also be 50/50 but my other two sons will not have to worry.