Posted by: Molly1976

pregnancy - 10/14/03 11:18 AM

Well, I have been reading this bulletin board for several years and would sincerely like to thank the generous people who made this site possible in the first place and to all the other people that have contributed to me (and many others) valuable tips and support. I am a 27-year old female with EHK. I have never met anyone with my condition, but based on what I've read, I feel I fall into the "moderate to severe" category...depending on the time year of course...I live in the Midwest. Living with EHK isn't easy (really, that goes w/out saying). My early childhood was good...middle school and early high school was a nightmare though. But my late teens and early 20's is when I learned to accept and be more comfortable with myself. In the grand scheme of things, what all is going on in the world, what I have to deal is relatively minor. Imagine dealing with our conditions 100 years ago! Of course, it is still hard to deal with it at times, but after the pre-teen and early teen-aged years things are MUCH better. Anyway, I have been involved with a great guy for 7 years. It took me several years to believe that this smart, handsome, sweet guy didn't mind my condition (I've seen MANY times on the bulletin board that this is a re-occuring theme with other Ichthyosis sufferers). So anyway, we are thinking of finally "tying the knot". We both want kids. But I don't want a child of mine to go through what I did when I was younger. And, please, please, please I am NOT here to criticize ANYBODY for choosing to have a child knowing that they will or will have a good chance of having a child with Ichthyosis. Although all of us share many of the same experiences, it appears that everybody's conditions are unique in their own way. Well, to make a short story long, I want to have children. From what I've read about EHK, it appears to be a dominant gene which means my kids have a 50/50 chance of inheriting it from me. Yet, on the other hand, neither of my parents are afflicted with Ichthyosis. So does that mean I have a "mutation" in my skin genes? Is that hereditary? Of course, I realize I need to consult with a dermatologist/geneticist about this at some point. But first I want to know if it's worth my time. Because to be honest, if a child of mine has a 50/50 chance at best, I will opt for adoption instead. I really hope I don't sound cold in this post. I think having this condition is a double-edged sword...It sucks having it, yet I am very compassionate to others in a way I wouldn't be w/o this condition. Also, I am wondering what other people's experiences with pregnacy have been. So, anybody's response would be much appreciated. Thanks.

God, Grant Me The Serenity To Accept The Things I Cannot Change, and the Courage To Change the things I can.
Posted by: Anonymous

Re: pregnancy - 10/14/03 12:41 PM

EHK doesn't usually skip generations so I'd say that you are the first in your family, like myself, to have it. Genetic mutation at conception or what ever you want to call it. Whether you inherited it or are the first in your family, the chances are still 50/50. I am in the exact same boat as you, I dated my wife for almost 3 years before we got married. In fact, today is our 10 month anniversary, yippee! I started out with the exact same feelings you are having now. I swore I would never have kids of my own because I didn't want to pass my EHK on to them and have them go through the same ordeals we did. Slowly but surely I have relaxed my stern position on this after considering the fact that no one, I mean no one, would ever be able to take better care of an ehk child then someone who has had it all their life and been through it all already. I also considered the fact that each generation of ehk seems to be less severe then their parents case. I will always be worried that my kids will have ehk but I will also be prepared for it, which is something our parents weren't. It's your personal choice wether or not to adopt, and no one here will chastise you for it. The world is full of ignorant people and we can't change that. I'm sure you'll make a great mother no matter what your choice is.
Posted by: Chandra

Re: pregnancy - 10/14/03 03:26 PM

Hi Molly,

I would contact a genetecist about your concerns and see if medical technology could somehow help you with in vitro fertilization.

Maybe I've been reading too many science fiction books, but I wonder if it's possible to screen whether or not a an egg has the EHK markers before you fertilize it? Then after they're sorted, the ones that don't have it could be fertilized and you could go through the in vitro fertilization process? I suspect that's not possible yet, but who the heck knows what can be done, and possibly in the near future.

No, you don't sound cold at all. If medical science can't give you the results you are hoping for, consider adoption, consider waiting a set time to see if science eventually can help you conceive a child of your genetic descent, consider if maybe another unaffected family member could donate an egg (ok, I know that sounds wild, but still! It's worth suggesting) or bite the bullet and go ahead conceive, and just cross your fingers and hope for the best for your baby no matter what.

As to pregnancy questions, I'd repost that question on the Mom's board. You're probably more likely to get some moms who have EHK themselves to post there.

[This message has been edited by Chandra (edited October 14, 2003).]
Posted by: Anonymous

Re: pregnancy - 10/14/03 10:20 PM

I think we posted something about testing fertilized eggs. The eggs would have to be fertilized outside of the body, allowed to develop and then tested, the ones with ichthyosis be destroyed(aborted), and the others would be planted in the mom. Not sure if this is entirely possible.
Posted by: Sirena

Re: pregnancy - 10/15/03 02:37 AM

Hi Molly!
How exciting! How ever you decide to have children you will love being a mom. I have one child by birth and the other is adopted. They are both wonderful beautiful kids. My daughter will have to have genetic counselling which I would recommend to you. Since we know she carries a gene for it. I don't think any one will think you are cold for being worried about it. We all want what is best for our children even before they are conceived, that is just mother nature I think.

I almost adopted another little girl with the same kind of ichthyosis as me from India. I spent a year getting ready to do it and in the process began to realize when people looked at her pictures and had comments or strange reactions that being the mother of a child with ichthyosis is at least 100 times harder than having it. It is that protective factor, worrying about their health, how people will treat them let alone the usual parental concerns. It didn't work out for me to adopt her for a couple of reasons but she is with a very nice family that adores her.

My son whom I adopted at age 5 had been neglected and abused and has some emotional issues but I am confident will be just fine. He is at risk for developing bi-polar disorder from his mother so I have to watch out for that.

I guess what I am trying to say is that birth or adoption has it's risks . You do what ever feels right in your heart. Trust your gut instinct and your intuition. I am convinced that my son was meant to be with me long before I knew he existed. On the day they called me about him I had just put down my long loved dog due to cancer. My son's name is the same as my dog. He was also born on the same day as my daughter. Just some of the examples. Get genetic counselling, gather all the facts and follow your heart. What ever path you choose, you will love being a parent. Good luck and take care!
Posted by: ShaunaJ

Re: pregnancy - 10/15/03 05:36 AM

I just thought I would share my story even though my daughter has lamellar and not EHK. I love my daughter very much and would never change her or her skin even if possible. I belive that everybody is born they way they are for a reason. Ryley has made my life better I belive. She has taught my whole family patients and that all the little things we complain about are just that LITTLE. She has taught us to be stronger and brought us all closer together as a family. Being a mother is never easy even if they are born with no problems belive me I have 3 kids only 1 has Ichthyosis. Ryley belive it or not is my easy one. Sure she has to be lotioned and taken closer care of because of other problems that happen from the Ich, but she is also a peace maker in the house. She is very accepting of all people not matter what package they come in. I tell everybody I would take 3 more of Ryley in a heart beat. We would have our own support group. As far as rude people go moms and dads are always protective of their kids even when nothing is wrong. Kids will always pick on other kids even when they are born with no problems, and yes it is harder when you actually have something to be picked on for but I have taught Ryley that she can handle the problems as she sees fit. You handel them with negativety and the out come will be negative. You handle them postively and the out come is more positive. There will always be a bully. I had one growing up and I was just slightly over weight, but instead of being negative I was positive and surrounded myself with positvie people. I knew the bully was insecure with herself so she picked on me and others to feel better about herself; This is what I tell Ryley. I have always told her how beautiful her and her sister are and how special they are and that my life is blessed because I have them in it. Ryley has had only one bad experiance and she handeled it well. The kid has never said anything to her again.

I do not think you are cold because you don't want to have a child with EHK. You do what your heart tells you to. You will be a great mom I am sure no matter what. I just thought I would share my story since I have one with Ich and two with out. Good luck!

The Johnsons
Posted by: threerxli

Re: pregnancy - 10/15/03 07:12 PM

I am a mom of three children with x linked ichthyosis. With my first child, I had no idea that I was a carrier, and the funny thing is, we thought he just had horribly dry skin! (SMILE) When I was pregnant with my second child, my husband and I were told that the blood work came back bad, and that we had to retest. When they retested, the Doctors told us that we would lose the baby that we had become so attatched to while I was pregnant, I was 20 weeks at the time. We were told the baby may be born with out a brain, or with out vital organs.(that if he did survive we would have a child on life support possibly all of his life) We had an ultrasound and everything was intact, but we still did not know the cause of the screening. With amnio, the doctors ruled out down syndrome and trisomy 21 and 18. They then tested for ichthyosis. After about 6 long weeks of thinking my child would die, or die shortly after birth during the pregnancy it was very hard. It took us a long time to conceive. When I found out that it was only ichthyosis, (now this is my reaction, it doesnt have to be yours), I was thankful and relived. I know that my boys (we had a third child knowing that if it was another boy he would probably also have ichthyosis, and he did, he is almost two) will and do have problems. They have over heating, they have cracked peeling skin, one of my boys is under testing for neurological probs, related to ichthyosis (but extremely rare). Right now they look like a reverse Michael Jackson...they have huge dark patches on such fair skin. It takes hours nightly to lotion and descale, and bathe, and the list goes on. (somewhere we fit in homework and dinner, sports, and a life) My boys have a high possibility of being sterile, and they may get testicular cancer. Do I feel guilty..yes. After all, its my gene that gave it to them, I am the carrier. I cried so many nights wondering what if this.... what if that...but life doesnt promise anything to anyone. I see so many people and children that are so much worse off than my boys. They also think that it's not so bad having their condition compared to what others have to face. Its a very hard decision. I think that no matter what choice you make, it will be the best choice. If I knew of a cure tomorrow I would want my boys to have it, but we are all glad that they are here too. Thats only my opinion. I just can't see my life without them..maybe we are lucky, such great family and friends. Just keep this in mind, and I do not mean to offend anyone..but I havent met a perfect person yet!
Posted by: Chandra

Re: pregnancy - 10/15/03 09:34 PM

Molly, you may end up being the one who comes back and answers the questions like this for someone else. Being a parent with ichthyosis AND having a child with ichthyosis, that's an entirely different ballgame from what most of us are familiar with.

Threexli and Shauna definitely have a world of experience for us to draw on as a parents of affected children, but I don't think there's anyone who's active on these boards right now whose feet fit in both shoes... one shoe being a person who has ichthyosis, and the other shoe of being parent to a child with ichthyosis.

Again, if you can manage it, go to the conference this coming summer. Last year I did meet more than one mother who "fit both shoes," and if I recall correctly, their children were about the age of four, so by July of 2004, they'll have even more knowledge for you to obtain.
Posted by: Veronique

Re: pregnancy - 10/19/03 06:50 PM

You should get a word with Diane Albone. She seems to be in exactly the same possition as you do, and she has just had those talks to dermatologists and genetic whatever they are called, about having a baby. I don't know exactly what the possibilitys where, but I do know she got news it could be possible for her to have children of her own without the change of passing the EHK using IVF. Also I do know it's a long time before you finally can start trying to get a baby, so don't hesitate and don't waste time: if you know you want to have children some day, start taking action now!
Posted by: AngV

Re: pregnancy - 10/21/03 02:01 PM

Hi Molly and everyone!

I have been extremely busy and have not been able to get on the board lately. I decided I would reply to this situation since I can totally relate. I also live in the midwest (MN) which is not the best for my skin! Anyway I am 30 years old and also have EHK. I am also the first in my family history to have this. I have been married for 8 years to my wonderful husband and have two beautiful boys, Dylan 7 & Cristian 2 1/2. They both were not affected by EHK. I also had a hard time deciding on the children. I had a really hard time as a teen also, but now I have come to realize through my mother that God only gives us what we can handle. I think about my EHK and then I think about all the horrible things I could have been born with. That makes me glad to only have EHK. As for my sons, my husband and I both decided that if they were born with it, oh well, it was meant to be that way. Yes, it is very very hard to be a child with ichthyosis but I feel that it has made me such a stronger person for it.

I also have some big news of my own, I am pregnant with my 3rd child!! I am due in April. Kind of scary to think of #3 but it was a suprise so I guess I was meant to have another child. However, since my boys are not affected I feel that this child will most likely be affected, I dont even want to get my hopes up that I would get three kids not affected. So I have been trying to prepare myself and my boys to the idea that the baby may have skin like mommy's. I have been seeing a genetic derm at the Mayo Clinic and I have had the DNA test about 8 weeks ago to find out which mutation I have (still waiting for the results) then if I find out which one I have I will be able to have an amnio at the end of my pregnancy to determine if the baby will be affected or not, that way the doctor and hospital will be prepared and we can plan better for the baby's care immediately after birth. I have been extremely concerned because I dont know how I will react if the baby will have it. I dont want to feel guilt but I think I may because of my boys being ok, some people say I should just be happy with my boys and why risk it. I dont understand because that says to me that maybe I should not be born because I look different? I am a perfectly healthy person who just happens to have a skin problem. I get tired of people who have nothing at all wrong with them passing judgement on me. I thnk that if you give your child the love and support it needs then the child will grow up fine. Sure there will be hard times, but come on, everyone has hard times - ours just are different. Dont let society decide if you should have a child because it may be affected, I say deep down you know if you want a child or not - regardless of the outcome. My children have made my life complete and if my new child will be affected with EHK, then we will take each day as it comes - but one thing is for sure, they will know how special they are and will have all the support they need from someone (me) who has been there. Good luck with whatever you decide!! Best wishes.

Posted by: Molly1976

Re: pregnancy - 10/21/03 02:17 PM


I just want to thank everyone for their kind-and very informative-responses. I appreciate it! I am still undecided as to what to do, but hearing so many different perspectives makes me think whatever I do do eventually decide on-no matter what it may be-will be OK. Angela, congrats on your pregnancy-I wish you and your family the best. Again, thanks, eveyone, for their kind responses, you've made me feel better.
Posted by: Sarah Helen

Re: pregnancy - 10/21/03 06:13 PM

I have to admit that I am in the same position that you are even though I am already married. The medication (Soriatane) that I am on has such a long half life that we have resigned ourselved to adoption.
My parents don't have the condition either, my k1 or k1o genes did mutate. To this day my mother blames herself for any pain or other issues I have ever been in. I don't want to bring a child into this world so that they can be subjected to the same pain. It may sound selfish but I don't want to have my own, real pain as well as the type of pain I see my mother in.
Adoption is a good option for us and I am looking forward to raising my children even if I can't give birth to them.
Posted by: Diane Albone

Re: pregnancy - 11/03/03 11:26 AM


I am Diane and married for 1 year and 4 months now. We really love to have children but not with ichthysosis. Some people think i am selfish but listen only we know what we have been true ans still do. I also have pain on my skin and in my heart for the words of people. I went to a professor a year ago for more information about having children. He took some blood and told me to wait for one year. They were going to try to find the course of my skin. Or from were it was comming. It was my K1 they told me a in september. I was so nervous for what my prof would tell me! Well i have two options. 1) get pregnant on my own and then with a test they would see at 11 weeks it our baby will have ichthyosis or not. If yes i was allowed to do abortion. But i know that i would never to that! The baby is alive at that age and my heart will brake. 2) is with ivf (invitro) but they would make a test before i could start with it. I am going to the prof of ivf on 8 december for more information. They told that it would take a year before the test is made to my skin problem. And then i could start ivf. Actually they are going to take the eggs of me out what have the K1 in it. So i should have children without EHK. Now first i thought i have to wait a year to start ivf and then maybe it won't work straight away. Because the prof can't garentue me that i will be pregnant straight away. But then i thing what is a year, two years in a life time and if i can make shure that our baby is healthy. Well this was my story. Hope it helps a little. Take care all big hug and kiss Diane
Posted by: Diane Albone

Re: pregnancy - 11/03/03 11:35 AM

To Angela!!!!

Your words came straight from your heart. I loved reading your story and it does help! I wish you all the luck with your third baby. Let us know how everything will go. When will the baby be born??? (about?) Can i ask you something? Did you give your children breast feeding? Because my skin comes off and i am affried the day we have a baby i don't know what to do. How did your skin react to your pregnancy? Was it better? bad? God i would like to now so much? My mum can't help me with these questions, she says she doesn't remember but i think it hurts to much to talk about it. Well hope to hear your ... take care xx Diane
Posted by: robinlynn9901

Re: pregnancy - 12/31/04 04:17 AM

Hi, my name is Robin and I am 26 years old. I was born with EHK and am the first in my family to have it. 6 years ago I met a wonderful man that saw right past my condition and wanted to marry me and offer me a life I never thought I could have. When it came to children my husband agreed that having children was a part of why were are here on earth. When I told him that my condition was dominant and that each child would have a 50/50 change of having EHK, he didnt even blink. I was blessed with such a loving man that believed we all have a purpose here- even if we are given a special challenge to overcome on this earth.
I am writing because, after reading the message from "molly1976", I felt compelled to share my experience with those who may be interested. I now have two boys, ages 3 & 5, who are effected by EHK and we are expecting another in July [img][/img]. My children are the greatest blessing ever given to me and my husband. They are so full of love and happiness that they could keep all of Iraq happy. Of course they are boys and they have thier quarells and they get into trouble as most kids do, but I couldnt have asked for anything different. Now that sounds so perfect, and deep inside that IS how I feel, but its not how I ALWAYS feel. There are times I wonder if I made the right choice. Times like now, when my son has begun kindergarten and kids ask questions. I remember being teased and laughed at at times, but my mother raised me to believe that no matter what others say- I have a purpose here. As Ive grown, I look back and see that it wasnt all that bad. Everyone gets teased for one reason or another and just cause the reason they found in me was more visible than most, didnt make me any different. I won't say I wasnt hurt by some of the names they called me or things they did to me, but now that I am where I am and I have what I have, those times are times Im glad I got to experience. I wouldnt be where I am if I hadnt been there. My two boys will see troubled times and I hope that I will be the best mom I can for them. Ive been where they will be and I hope that will help them.
Molly, your feelings and thoughts about having your own children are all valid and Im sure all parents with "something special" wonder if they should too. Its a personal decision and one that if you make it in honesty and love, it will be the right one. For me it was to have my own kids. Such a strong emotion when I thought about it- I would have denied all I believed in, had I not followed the promptings. But there are many that are meant to help the many other children that have no homes. My husband and I hope one day to be able to adopt a child or two- just so we can be a part of the joy in giving a happy life to a child who needs it.
I know there are methods of invitro that can help you. I have a close friend who carried the gene for muscular distrophy and her and her husband wanted to stop the disease from continuing in the family. I later found out they were able to have her eggs tested. Those that were effected were discarded, and those that were not- were fertilized and implanted. Only catch is that they dont just implant one at a time. her first set of implanted embyros didnt take, but all of the second did! 8 months later she gave birth to three beautiful girls. If you believe in God, take your questions to him in faith- you will recieve an answer.
Thank you to everyone who has written above- its wonderful to hear others think and feel as I do.
Sincerely, Robin.
Posted by: PrayerKaren

Re: pregnancy - 04/07/05 03:18 AM

Hi, this message is to Molly and Sarah, first I¡¦m just at amazed right now, in a good way I mean, Wow! I don't know quite where to began, as I read through all the postings, my heart is experiencing so many different things. The reason for this is because some of these people who have posted responses I¡¦ve known for quite some time and also know what their thoughts on this topic was at one point before in comparison as to what it is now, and I also remember what I went through on an emotional level before I started having children and the challenges I went through with trying to make the same decisions.

I guess I¡¦ll start by telling you who I am and where I stand on this issue. My name is Karen Sawyer and I live in Hemet, CA (Southern CA) UGH! ƒº Sorry Keith no offense ƒº anyway, I am a 37 year old mother of five four of my own and a step son, I only have one girl out of the whole bunch who happens to be my oldest child age 18. I also happen to be a third generation of people in my family who have EHK. My mother was a mutation. She had three girls, out of those three girls there were two of us that was born with EHK. Unfortunately, one of them died at 24 hrs old due to skin infections as well as multiple other complications.
As I said, I myself have had four children out of those four children only one was born with EHK. When she starts having children of her own then she will have a 50/50 chance of the baby being born with EHK. My sister who wasn¡¦t affected and my boys who weren¡¦t affected have nothing to worry about with their children or future children.

My family and I have had the honor of meeting Keith and his beautiful wife Beverly in person and we have discussed this very subject during one of our many conversations and Keith I¡¦m soooo happy to hear that your feelings have changed on this subject, because even though it¡¦s tough, as you said and as I have learned from personal experience it¡¦s well worth it and no one can take care of a baby with EHK and understand what that child will go through better than someone who¡¦s experienced it first hand. And even though we don¡¦t want our children to have to endure the same kind of pain we have, in some ways it also has its benefits. My daughter as Keith knows was born with EHK also as many people on the board knows including Keith, Glori, Robin, Chandra, Les Avakian as well as many others some years back she went through a rather ugly experience with not only other children within her school, but with the school system, teachers, and court system. If you go back through the archives you would be able to find and read about those, but I was blessed and the awesome friends I made on this site came to our backing and was a tremendous support system for us and sent them all for a loop.

I guess the reason I say this, is because even though my daughter has been through many things and yes, she¡¦s had to deal with going through depression due to it as well, I can also say it has made her a more compassionate, loving, and accepting person then she may have been had she not had to go through this. She is now a beautiful 18 year old young lady who will be getting married in September, she¡¦s also bright and has her head on straight. She¡¦s a great kid who has been a blessing from day one and she loves people,

I get rather sentimental over this issue because at the age of 18 when I found out I was pregnant, many of my family members threw a fit telling me how selfish I was because I wanted to have her, I was told, I was only thinking of myself and I should get an abortion, something that I knew I could never do. They would say ¡§how could you possibly want to put another child through the hell you¡¦ve gone through¡¨. But you know what? If I had the choice to do it all over again, I would make the same decision as I did then. Yes there is a chance that with each child you have there is a 50% chance of that child being born with this skin problem, but it doesn¡¦t mean it will necessarily happen and for me the risk was well worth it. Out of my four only one had it and although it was a challenge for us both we came through it and are better because of the experience.

It doesn¡¦t matter if your child is born as perfect as possible children will always find something to be mean about. Unfortunately it¡¦s the way of our society that we live in today, but at least because of your own experiences you will have the ability and advantage to be able to understand and sympathize with that child because you have been through it yourself and you¡¦ll be able to help that baby through anything that comes their way.

Sarah you mentioned that you are on Soriatane, I have been on Soriatane since 2002 and have loved the affect it has had on my skin, however, I¡¦ve not loved the way it has affected my bones. My daughter also about six months ago convinced our Dermatologist to put her on Soriatane and she¡¦s had somewhat success with it, she has decided to wait until she turns 21 then plans to get off of the medicine so that by the age of 25 she can start having children of her own. As I mentioned earlier she is getting married in September and she and her husband hopes to have children after they finish college. I hope your experiences with Soriatane has been good. I am currently off of it due to my cholesterol levels and Liver function test coming back elevated but maybe I¡¦ll get back on it later. I hope all goes well for you both and whatever decision you two make will be the right decision for you, my only goal in writing this is to encourage you that there is light at the end of the tunnel should you decide to have your own children, but if you don¡¦t there are plenty of beautiful children out there who need the love of a loving mother and father and I¡¦m sure you both will make wonderful parents. Good luck on whatever you decide to do.

If you¡¦d like to contact me directly you can do so at

Karen Sawyer
Hemet, CA
Hands Of Worship
Deaf Ministry
Posted by: jenjen

Re: pregnancy - 02/07/06 08:42 PM

Hello there,

I totally understand what everyone is saying. We are going through this same situation right now as I am pregnant - and I also have EHK and my 14 year old daughter has EHK.

We will have a CVS performed the week of March 7 to see whether the baby has EHK as well and decide how to proceed.

It is such a hard path for me to follow right now and it is so nice just to be able to read what others have posted.

Thanks for allowing me to share.