Topic Options
#27678 - 06/02/11 08:40 PM Icthyosis gene removed
Brittany08 Offline
New member

Registered: 05/29/11
Posts: 4
Loc: Texas
Has anyone spoken to a geneticist about having your egg and your spouses sperm monitered when your trying to concieve so that when they come together a doctor can remove the icthyosis gene, or more specifically the EHK gene, which is what i have, before it has a chance to attatch? I have been looking into it but wanted to see if anyone here has heard anything positive about a procedure like that before i begin calling doctors. Any feedback would be so greatly appreciated

Top
#27680 - 06/04/11 02:03 PM Re: Icthyosis gene removed [Re: Brittany08]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
You cannot have a gene removed.

You can, however, use IVF to conceive. You generate 6-10 eggs, they use your partner's sperm and make embryoes in a petri dish, then let them grow 3-5 days. Once they are that big, one cell from each embryo can be removed and tested for EHK if your specific mutation is known.

Then they implant only the embryoes that do not have EHK mutations.

The procedure is called PGD (pre-gestation diagnosis), and the whole process costs around $20,000 per attempt, with a success rate of getting pregnant about 25-40% each attempt depending on age and if you have other fertility issues.

The only other medical method for preventing a child from being affected is to have amniotic screening done after you are pregnant, and abort or continue a pregnancy once you have an answer.

Both of these, naturally, have a lot of personal ethics to consider.

The third option is to adopt.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

Top
#27685 - 06/05/11 02:39 AM Re: Icthyosis gene removed [Re: Hearsay]
kmotto2002 Offline
Member

Registered: 10/29/08
Posts: 32
Loc: Wisconsin
Not to be mean or anything, but it has to be asked.

Why go through all of that nonsense and just have a child?. Now before you jump on me, I'm almost 40, married for almost 19 years, 3 kids (all non affected) My husband and I talked at great length about having children. We decided that if we had a child that has what I have (which is EHK - severe form BTW) we would stop. Yes, we took that chance and we have NO regrets. We wouldn't have any regrets if our first child had EHK.

We were offered an amino screening test but respectfully declined because no matter what the results were, we were going to have the baby.

I was told, way back when, that unless you physically cannot carry a baby you were not eligible to adopt. Now things have changed in 18 years, trust me, but it made my mind up that I wanted to have a baby like everyone else.

We are not stupid, foolish, or any other adjectives you can come up with. We talked to the doctor's and got the information we needed to make up our minds.

Top
#27688 - 06/06/11 12:08 AM Re: Icthyosis gene removed [Re: kmotto2002]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Ultimately, that's what we decided, too. Our first was born with ichthyosis and we looked into IVF for future children, which is why I know so much about it, but after adopting my second and getting pregnant with the third, who is also affected, we pretty much came to the conclusion that you only live once. So now we have 4 kids and 3 have ichthyosis. It's a challenge to live with all the baths and filing and whatnot, but in the long run, I have healthy, smart, funny, happy kids that happen to have a skin problem.

It's one of those decisions that everyone has to make for themselves. No one can make it for you, even if it is someone that comes to the opposite conclusion. We have people here that never married, never had kids, had a bunch of kids, adopted only, fostered only and some that aborted once they found out they were carrying an affected baby. No one has to live with any of these decisions but the people making them, although for many of us it is hard to come to peace with all the options available.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

Top
#27710 - 06/09/11 04:23 AM Re: Icthyosis gene removed [Re: Hearsay]
Brittany08 Offline
New member

Registered: 05/29/11
Posts: 4
Loc: Texas
I really appreciate all of y'alls comments, advice, and wisdom.

I'm only twenty ones years old and growing up with EHK, a severe form as well, was quite hard for me. It still is from time to time. I feel inhibited by it alot. As much as i know i shouldn't, i do. Always have i suppose.

All throughout middle school and high school i didn't do certain things i wanted to or join in certain activities with friends that i wished i had, simply because i was embarrassed and insecure. And even now, out of school and an adult, i'm still the exact same way.

Now that i'm wanting to have children, my desire for them is to never feel inhibited by anything in life, least of all because of there appearance.

So needless to say, my reasoning for posting this and searching for information and reccomendations on doctors that can help may not be ideal for others but its close to my heart. If you have any information whatsoever or just words you'd like to share with me i would love any feedback

Top


Copyright 2012 Ichthyosis Information