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#16531 - 10/21/03 02:17 PM Re: pregnancy
Molly1976 Offline
Junior Member

Registered: 10/14/03
Posts: 2
Loc: USA
Hello,

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.
_________________________
God, Grant Me The Serenity To Accept The Things I Cannot Change, and the Courage To Change the things I can.

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#16532 - 10/21/03 06:13 PM Re: pregnancy
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
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.
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#16533 - 11/03/03 11:26 AM Re: pregnancy
Diane Albone Offline
Member

Registered: 07/08/03
Posts: 38
Loc: Tongeren/Belgium
Hello,

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

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#16534 - 11/03/03 11:35 AM Re: pregnancy
Diane Albone Offline
Member

Registered: 07/08/03
Posts: 38
Loc: Tongeren/Belgium
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

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#16535 - 12/31/04 04:17 AM Re: pregnancy
robinlynn9901 Offline
Member

Registered: 12/30/04
Posts: 40
Loc: Scotia, NY, USA
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]http://www.ichthyosis.com/ubb/smile.gif[/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.

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#16536 - 04/07/05 03:18 AM Re: pregnancy
PrayerKaren Offline
Member

Registered: 11/21/00
Posts: 84
Loc: Hemet, CA, United States
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 prayerkaren@adelphia.net


Sincerely,
Karen Sawyer
Hemet, CA
Hands Of Worship
Deaf Ministry
_________________________
Karen L. Sawyer

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#16537 - 02/07/06 08:42 PM Re: pregnancy
jenjen Offline
Member

Registered: 10/05/05
Posts: 31
Loc: jersey city, nj, usa
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.

Jenny

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