chance of passing it on?

Posted by: Ing

chance of passing it on? - 03/14/10 10:20 PM

Hello everyone.

I have ichthyosis, and have had it all my life. I am not 100% sure but I do believe it is a "midly-severe"(if that makes any sense) case of ichthyosis vulgaris. Now, from what research i've done It is an autosomal domintant disorder which basically means if any one of my children were to get that gene from me, they would have it. My mother had a mild case of it and I believe my father was a carrier for it. All of my research states that even though its autosomal there is only a 50/50 chance of the child being affected by it. But if I got the gene from both my mother and father wouldnt that increase it to a 100% chance? I'm sure you understand my concern, while this is not a life-threatening condition it is something i would rather suffer through alone then have any possible children suffer through as I had to. The reason I'm unsure about this is that some research I found also said that there is some evidence that suggests that if you have both genes for ichthyosis rather than just one you will have a severe case as I believe I do.

Perhaps someone with a similar situation could shed some light on it for me?
Posted by: Ing

Re: chance of passing it on? - 03/15/10 01:25 AM

oh goodness, after looking it back over the word "carrier" seems to be a rather poor choice. What I meant was that I thought my father might have had a mild case of it like my mother. However, I contacted him few hours ago to ask and he said that his family had shown no signs of it and he had no symptoms either.

So, this question has more or less answered itself
Posted by: Promiseland

Re: chance of passing it on? - 03/17/10 01:37 AM

Common for many who suffer from Vulgaris to have carriers in both sides of the family. Let us assume one parent has symptom and the other does not, but extended family of second parent shows symptoms. Some of the children of these two people may have mild symptoms and some may have severe symptoms. If those with mild symptoms have spouses whose families have no symptoms, their children may show no symptoms at all.

If you have severe Vulgaris, which is rare, you may have bad scaling that could lead to prickly itch. I do not know if your severity would or would not increase the chance of you passing the condition on to your offsprings.

Seems to me all you could do is find a spouse who shows no symptoms to maximize your chance of having children with no ich. Easier for you to do this in a large and cosmopolitan city rather than a small town or village where ich may be more prevalent.

Posted by: Ing

Re: chance of passing it on? - 03/17/10 01:48 AM

yes, thank you, you reaffirmed my thoughts. my ichthyosis is not severe in the truest sense. My skin always has been noticably scaly and you can see skin cells that peel off or can be scratched off causing a sort of "dandruff" effect. However the symptoms have lessened since i have passed the age of puberty. I have a sister who has a much milder case of ichthyosis and it is almost non-existent with her so i can only assume that mine is considered somewhat severe. As for the prickly itch, it most commonly happens when i go from a cooler to a slightly warmer temperature and my body has to adjust.

My main concern is not necessarily that my children might inherit the condition, it is that they might have a more severe case like myself. While of course 20 years ago the information regarding ichthyosis wasn't necessarily the best for treating it but it is still not something I want for them. But since I obviously have no control over that particular matter i shall simply have to trust in God and cross that bridge when I come to it.
Posted by: Promiseland

Re: chance of passing it on? - 03/17/10 06:48 PM

If you have the "mild" scale symptoms you have described, then I assume you could sweat and sweat quite profusely, but may itch prior to sweating on some occasions if the scales are bad enough.

But you most certainly have a measure of control. Severity of vulgaris symptoms fluctuate with the seasons. The hot and humid summers allow for sweating and the sweating in turn exfoliates the skin, allowing for more sweating in a virtuous cycle. On the other hand, cold and dry winters inhibit sweating, and the build up of scales go on unchecked, creating more and more discomfit, especially the risk of prickly itch, the next time you need to sweat. Then, it logically follows that you and your family should find the most tropical locale you can feasibly move to for you to live and work. This ideal locale will also allow for your children the chance to grow up with minimal symptoms, even if the condition is severe. In fact, the more severe the Vulgaris symptoms, the more important it is to live and work in the tropics.

Other variables that would impact quality of life would be exposure to air conditioning (not good at all) and alcohol consumption (also not good). Air conditioning takes away the exfoliating benefit that hot and humid weather provides, and alcohol dehydrates you.

Posted by: Ing

Re: chance of passing it on? - 03/18/10 08:06 PM

well fortunately for the alcohol I have decided not to touch it even before i thought about that so that works to my advantage.

As for the climate, I intend to move to japan eventaully which has similar season temperatures to my home state except the winters are supposed to be slightly warmer and the summers will be slightly cooler but still hot and humid compared to what most people are used to. From what i've researched it sounds like it could be a more suitable climate for my condition and with a little care during the winter months it should be manageable at the very least.
Posted by: Promiseland

Re: chance of passing it on? - 03/19/10 02:02 AM

Interesting. Japanese culture I do not think would be very amenable to people with rare medical conditions with physical symptoms such as ich. Never heard of any Japanese with vulgaris at all. Good luck to you.
Posted by: Ing

Re: chance of passing it on? - 03/19/10 02:38 AM

I don't necessarily think the physical appearance will necessarily be a problem since the more noticeable areas are the legs rather than the upper body and since japan is also an island nation being so close to the sea should help with the condition on its own. While i've never actually heard of a Japanese having ichthyosis i don't see necessarily how it could not happen as I dont believe one particular genetic race has an advantage against it over others. And conditions like asthma appear over there and people with ichthyosis can tend to have conditions like asthma as well.

Worst case scenario even if it is looked upon differently that will already be expected for me since I am a foreigner and japan is a very homogeneous country. I think that even if that is the case people will come to accept it at least to an extent as they have done here.
Posted by: Ing

Re: chance of passing it on? - 03/19/10 03:15 AM

hmm, after a quick bit of research there are some cases of ichthyosis in japan and there is even a group called the "japanese families of ichthyosis" which meets yearly in a reunion

So, the situation is probably not much different then here, few people have heard of it but most dont question it once you explain what it is.
Posted by: Promiseland

Re: chance of passing it on? - 03/19/10 03:20 AM

I do not believe the incidents of the more common forms of ich, such as vulgaris or X-linked are evenly distributed through all population groups. The extremely rare and severe forms of ich may pop up in any population group because of genetic mutation. But that is not the case with Vulgaris.

Vulgaris is a lot more prevalent in subtropical and tropical climates because the symptoms are less severe in those climates and people who suffer from it can pass the genes on through the generations. On the other hand, someone with severe vulgaris and a sweat disorder would have a lot of trouble surviving, much less procreating, if he is from the northern latitudes and from a cold and inhospitable climate. I would say in centuries past infants with severe ich of any kind may be exposed by their families.

In some coastal provinces of southern China Vulgaris is prevalent to an extent that is unimaginable in the West. I would not be surprised if it originated centuries ago in China.

If you are American and live in the States, demographic statistics may say that probability that you are of northern European descent would be high. However, I do not think so.
Posted by: Promiseland

Re: chance of passing it on? - 03/19/10 03:24 AM

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.
Posted by: ichthydad

Re: chance of passing it on? - 03/20/10 07:06 AM

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.

Posted by: Allie

Re: chance of passing it on? - 03/20/10 07:15 PM

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???
Posted by: Promiseland

Re: chance of passing it on? - 03/22/10 08:20 PM


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.
Posted by: Allie

Re: chance of passing it on? - 03/23/10 12:54 AM

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?

Posted by: Allie

Re: chance of passing it on? - 03/23/10 02:46 AM

I was also wondering who is this derm you are seeing. I would like to find a derm that specialized in ich.
Posted by: Martika

Re: chance of passing it on? - 03/25/10 11:16 PM

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.
Posted by: Allie

Re: chance of passing it on? - 03/26/10 12:14 AM

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?
Posted by: KarenM

Re: chance of passing it on? - 03/26/10 05:12 PM

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 ( 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.
Posted by: Martika

Re: chance of passing it on? - 03/28/10 09:04 PM

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
Posted by: Ing

Re: chance of passing it on? - 06/22/10 01:37 AM

I realize this is an extremely late reply so my apologies.

In response on whether or not I would rather have not been born than have lived with Ich I would say yes I would rather have lived with ich. However, At times, particularly in my younger years it is been a painful life as we all know children can be quite cruel sometimes. Even in my adult life it has caused me pain and suffering and while it is something that makes me unique its not something im necessarily happy with.

I would love to have children, A family is one of my dreams but when I have children I would much rather have to live with this condition and go through the pain of it myself than to have my children go through it as well. I still do have every intention of getting married at some point and having children, I simply worry for their sake.
Posted by: momdoc284

Re: chance of passing it on? - 10/31/10 03:57 AM

I have IV and saw a genetics counselor (for another issue) who said my chances of passing it were about 50%.
Posted by: ichthydad

Re: chance of passing it on? - 03/10/11 06:26 AM


As you mentioned, my post was addressed to Ing, not to you, but since you decided you had to add your vitriolic verbage to this discussion, I would like to add a few points for you to consider.

- You seem to me quite opinionated on a sensitive subject and seem to feel the need to be "heard". I would recommend counselling to find the root of your dissent.

- You are obviously well-read as your vocabulary is quite advanced. However, if you are a psychologist, geneticist, or even otherwise a moderator for this group, I would much prefer you'd come forward and state this. If you're not, then like the rest of us, you are merely sharing an opinion. One that is from your viewpoint, full of inference to your life experience. That said, it is your opinion and yours alone.

- I will address your next two points in reverse order, because it is my opinion that, you must have read my post that way. My boys are very well adjusted. One is an adult, well past puberty, the other in the final stages of puberty. My eldest has shared that he does not wish to have children, my youngest is exactly the opposite. I love and support each decision as their own.

Your 'perspective' as you called it, was really a judgement made on a few lines of text. You don't know me, so please do not judge me, for that matter from my perspective it would be best if you reserved 'your opinions' as they were in themselves, as you termed, "Vitriolic". (for those who do not know what the word, 'vitriolic' means. It is defined as vit·ri·ol·ic (v t r - l k). adj. 1. Of, similar to, or derived from a vitriol. 2. Bitterly scathing; caustic: vitriolic criticism.) It seems to me from your comments (in this and other threads) that your life experiences have made you that way. I am neither a psychologist, nor a geneticist, so I will not make any further statements to that effect.

I NEVER stipulated that someone with IV or LI SHOULD have children. The only thing I am adamant about is that just because a person may be afflicted, it should not prevent them from having children if they so chose to do so.

- My analogy was perfectly sound. No one on God's green Earth is perfect. Everyone has some level of iniquity. That is what makes us Human. I muse, that a person with your opinions, was probably the same type that agreed with the sterilization of people with mental retardation*.

*That last statement is merely an expression of what it means to submit a vitriolic argument. It was intended to be caustic, meant to shock. Why? Simply because I was shocked by how narrow-minded your comments to my threads really were, and I wanted to make my feelings about reading your post perfectly clear.
Posted by: soulkeep

Re: chance of passing it on? - 04/22/11 05:54 AM

Thank you suggest, but good things to come.
Posted by: Promiseland

Re: chance of passing it on? - 04/26/11 07:51 AM


Did I touch some politically correct sensitive nerve in you? That you have to be "vitriolic" in your response a year later? I say the same thing to you I said a year ago. Cheers.
Posted by: tuditdloevy

I have owned two $1000 turbine setups - 08/03/11 09:07 AM

Posted by: vangurd71

Re: chance of passing it on? - 03/09/15 04:32 AM

On the topic of 'passing it to next generation', it needs some background. I am going to bore you with a long story

Just like most children growing up, I wanted to be a professional athlete. I started playing soccer at my early childhood. I am from a tropical country, so the damp weather keeps the skin dehydrated. However, even in tropical country, it was difficult to play after September. Not to toot my own horn, but I was quite good at soccer. However, children asked me so many uncomfortable questions that I stopped playing soccer. Now that I look back being a middle aged man, I wish I was stronger to overcome those petty self-esteem issues.

Surprisingly, my skin started to improve(still quite scaly but it stopped bleeding). I started playing soccer again in my high school. Now, I discovered a new phenomena which became a huge issue. Overheating to a point that I passed out in the field at least dozens of times, that was the end of my soccer aspiration.

I started playing cricket as its fully dressed sports and physical requirement was a lot less than soccer. I distinctly remember, when I was 17 years old, I was playing for my high school, and I was so tired that I needed a runner(runner does all the running, you just bat the ball). It was so embarrassing that I took myself out of the team.

I did not have that many friends growing up, but the limited friends that I had, they were extremely loyal. However, I used to take their compassion as a sign of pity( I know self-esteem issue). I always treated my close friends with harsh words.

After I graduated from high school, I immigrated to United States. Usually first generation immigrant has serious confidence issues. However, exact opposite took place for me. In my under grad years I became very confident(or learned to mask my self-esteem issues). I started to excel in school and I had a normal youth. However, I was still bit nervous about relationship. I did have a few brief relationship with few amazing girls. However, I noticed that I only started pursue women during summer. Also, I really started having a negative opinion about relationship in my head. I would just pursue one night stand or brief encounters.

I moved to New York City, and continued with adult life. Not interested in any relationship, and just looking for one night stand. However, I also discovered meeting women became much difficult as oppose to college(hard to believe considering NYC). At any rate, I continued in that path for almost 5 more years.

Then one night I met a girl through a mutual friend. Without going into details, we were perfect for each other. Fast forward to six years, she became pregnant last year. At the same time she had further academic aspiration. We spoke and I convinced her that for her career aspirations, a child is a wrong choice for the time being. She had an abortion. However, I knew the reason I convinced her to have an abortion because I cannot consciously put a child through what I endured in my life.

I am no longer with the girl and I think its for the best.
Posted by: Glori

Re: chance of passing it on? - 03/18/15 10:30 PM

Wow...thanks for sharing. I hope that you have better luck in the future and can at least see through the people on this board that good relationships ARE possible!
Posted by: Derydeartact

Re: chance of passing it on? - 08/23/16 04:32 PM

Originally Posted By: Ing
hmm, after a quick bit of research there are some cases of ichthyosis in japan and there is even a group called the "japanese families of ichthyosis" which meets yearly in a reunion

So, the situation is probably not much different then here, few people have heard of it but most dont question it once you explain what it is.

I've never heard about that and I've never seen nobody here doing it (where I live). But I honestly think that it would be a good idea...
Posted by: Derydeartact

Re: chance of passing it on? - 08/23/16 04:33 PM

oh yeah... I did have seen that the post has been written a long time ago..