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#26025 - 03/18/10 10:24 PM Re: chance of passing it on? [Re: Ing]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
I would hazard to guess that incidents of vulgaris in Japan would be lower than other parts, especially warmer parts, of Asia. Certainly, historical isolation of being an archipelago may explain some of it.

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#26031 - 03/20/10 02:06 AM Re: chance of passing it on? [Re: Promiseland]
ichthydad Offline
New member

Registered: 03/20/10
Posts: 3
Loc: Lethbridge, AB, Canada
Hi Ing,

My ex-wife of 15 years has Lamellar ichtyosis, so do 2 of our 3 children (both boys). While my daughter stands a good chance of being a "carrier", my boys actually stand a better chance of having unaffected children than she does.

There is not a single person in my extensive, dutch, catholic family affected. I have over a 100 people in my immediate family and no where is ichthyosis prevalent. My father and I do share a very mild skin condition which only affects the hands in spring and fall. Our hands tend to peel. I do believe that this may be the reason that 2 of our 3 children are affected by ichthyosis. Strangely, the boys have inherited all the recessive traits of their parents. My ex is a brunette with brown eyes (both dominant), whereas I am blonde and blue-eyed (both recessive). My wife has ichthyosis (recessive), whereas my skin is "normal" (dominant).

The only way to know absolutely for sure whether or not to date, marry then pro-create with a person you fall in love with, is to comprehensively pre-screen their family medical history and ask for a DNA sample.

Right, not only completely stupid but impractical as well. My boys are extremely well adjusted and have a milder version of the disorder than that of their mother. She in turn has a milder version than her biological father. A well respected Canadian dermatologist who has done extensive research into the disorder locally advised us that although we stand a 25% chance of having children and subsequently grandchildren with this disorder, it will eventually be "bred" out.

My children accept living with their skin affliction, and live otherwise ordinary lives. Quite a few people have mentioned they find my ex-wife and children, Unique. Sets them apart from the crowd of otherwise boring people.

I am overweight, this runs in my family as well. I eat healthy, exercise regularly, but still I am overweight. Should I not have children just because I'm overweight? If you tried to tell me that I wasn't allowed or shouldn't, I'd simply tell you to stick it! lol.

I love my ex-wife unconditionally (divorce was not my idea and had more to do with money issues than anything else. Skin was definitely NOT a part of it). I love my children the same way. Society is self-conscious in times when it need not be. The person you fall in love with, with "normal" skin may have their own issues. Weight, anxiety, depression, severe PMS, and the list goes on. Focus on living your life with your affliction, don't let it live it for you. I could not imagine life without my precious children.

Would you rather not have been born, than live with ichtyosis? I would hope your answer would be the latter. Life is much too precious to focus on our own inequities.

Just my 2 cents worth.

Davey
_________________________
Proud Dad of Chesney (LI), Courtney (Unaffected) and Brendan (LI)

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#26035 - 03/20/10 02:15 PM Re: chance of passing it on? [Re: Promiseland]
Allie Offline
Member

Registered: 03/19/10
Posts: 18
Interesting! I have ichthyosis, very very mild case, and I too was wondering if I will be passing this on to my children. No one in my family has ichthyosis, no relatives either. I'm the only one. My husband does not have ichthyosis either, would us having children make them ichthyosis free???

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#26045 - 03/22/10 03:20 PM Re: chance of passing it on? [Re: ichthydad]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
Davey,

You addressed your post to Ing, but responded to my post. So, I will chime in.

You are participating in a discussion on this board about a topic that is more incendiary than any other topic on this board for obvious reasons---the decision to have children knowing the ich condition could be passed on. In the past there have been vitriolic disagreements on this topic, but it has not happened for a number of years. Since this board exists to support people who suffer from ich and their loved ones, the formal stance by the moderators and most posters is one of non-judgment toward people who would prefer to have children, and to provide advise and guidance to parents who otherwise may not know how to care for children with ich symptoms.

However, some posters who have disagreed with the non-judgmental stance have made their voices heard over the years. While most reasonable people can accept their opinions as worthy of consideration, the purpose of the board is such that dissenting views on this topic are not encouraged for obvious reasons.

If someone with ich has reservations and doubts about having children, and want to talk about it with others, that is perfectly legitimate and ok. He or she is not telling others NOT to have children. So, your analogy about telling someone to stick it if he says overweight people should not have children is not really applicable in any way.

And if you say your boys are well adjusted, I would say you really would not know, especially if they have not reached puberty. And when you say others have commented that your wife and children are "unique" and different from "otherwise boring people," I take from your statement that your are giving expression to a psychological defense mechanism that you have erected about ich and your family. And, from my perspective, you yourself really have unresolved issues about ich and your family than you have let on, especially when you seem to be adamant that others with ich SHOULD have children.

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#26047 - 03/22/10 07:54 PM Re: chance of passing it on? [Re: Promiseland]
Allie Offline
Member

Registered: 03/19/10
Posts: 18
Davey! I found your story very interesting. I too am from Canada and would love to meet your derm! I have never been diagnosed for ich, but I do share some certain symtptomes of ich vulgaris. One of my biggest concern was to have children, but unfortunetaly don't want to spread it too them. Both my parents don't have ich, and neither too any of my extended family, I was very surprised to find myself carrying this. I was wondering though, I have a very mild condition, do your children have a very severe condition? Did your wife? My concern is, IF I have children, I don't mind passing on my mild case, because it's controllable, but if I have the chance of passing something more severe I would requestion the idea of having children. Did your wife ever not consider having children?

Allie

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#26051 - 03/22/10 09:46 PM Re: chance of passing it on? [Re: Allie]
Allie Offline
Member

Registered: 03/19/10
Posts: 18
I was also wondering who is this derm you are seeing. I would like to find a derm that specialized in ich.

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#26069 - 03/25/10 06:16 PM Re: chance of passing it on? [Re: Allie]
Martika Offline
Member

Registered: 04/15/05
Posts: 78
Loc: Southern California
Hi all, I'm a woman but have 2 boys, one has EHK (got it from me) and the other is unaffected.

my unaffected son has a 1:300,000 risk of having a child with it since that's the normal risk
from a womans POV... I knew the risk so did my husband and both of us were willing to accept that risk to have children. We plan on 2 more children in the future. My hubby now has the experience of what care EHK needs in babies and he is willing to try for 2 more kids in the future.
_________________________
Mommy to TJ (EHK, T21, 8/14. VSD/ASD repair 11/4) Wife to WONDERFUL Husband and daddy Carlos, and Baby Mason Born 12/9/09

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#26076 - 03/25/10 07:14 PM Re: chance of passing it on? [Re: Martika]
Allie Offline
Member

Registered: 03/19/10
Posts: 18
Thanks Martika!
So you have EHK or just a carrier? I was wondering if I have ich vulgaris, could I only then pass on ich vulgaris, or could it be worst. Are there tests while pregnant to determine if the child is affected?

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#26102 - 03/26/10 12:12 PM Re: chance of passing it on? [Re: Allie]
KarenM Offline
Member

Registered: 11/07/08
Posts: 35
Loc: Reading, UK
You can't just be a carrier for EHK because its a dominant condition - as is vulgaris. If you have the gene you will have the symptoms. That also means there is a 50/50 chance of passing it to your child. The gene causing EHK is known so you can check for it when you are pregnant, but only a few of the genes causing vulgaris are known so you are unlikely to be able to check for that.

I was reading the FIRST website recently and there was an article on vulgaris (http://www.scalyskin.org/content.cfm?ContentID=260&ColumnID=4) saying that vulgaris is actually semi-dominant. So if your partner also has vulgaris then your child could have a bad case. If your partner doesn't have it then your child should have it the same severity as you.

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#26116 - 03/28/10 04:04 PM Re: chance of passing it on? [Re: KarenM]
Martika Offline
Member

Registered: 04/15/05
Posts: 78
Loc: Southern California
KarenM is correct. EHK is a dominant condition. In the case of EHK there are 2 genes that can cause it so when I was pregnant the first time they did a blood test to locate my genetic problem so that they knew where to look in the baby's dna
_________________________
Mommy to TJ (EHK, T21, 8/14. VSD/ASD repair 11/4) Wife to WONDERFUL Husband and daddy Carlos, and Baby Mason Born 12/9/09

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