Incontinentia Pigmenti Community
family planning
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This patient support community is for discussions relating to incontinentia pigmenti, genetics, and breast, dental, eye, hair, nail, nervous system and skin problems.

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family planning

I am 26 and I have IP. I was diagnosed at birth, due to the rashes. My parents and I participated in a medical study in Washington State. My younger sister was also born with IP.  Recently my mother told me that as a part of the study several doctors advised her that having more children would be "irresponsible", this was news to me, and prompted me to do more research into IP (my symptoms have been relatively minor...skin discoloration, no wisdom teeth, neurovascular veins in my eyes that I had treated with lasers.)
My husband and I would someday like to have children...and we believe strongly in educating ourselves... and making the best possible decisions for ourselves and any family planning.
Adoption is always an option...but is there a way to safely have a biological child? What steps should we take??

Thanks
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I am the Exec. Dir of the the IP fdtn.  I would respectively disagree with having children as being "irresponsible"  that seems harsh to me.

In the year 2000 the gene which causes IP was identified.  As a result there are several steps you can take to have a child.  I would advise that you consult with a genetic counselor who can give you relevant info.  I would also suggest that you contact the DNA lab at Baylor College of Medicine in Houston Texas as they would want to confirm your specific gene mutation.  Tel:  1-800-411-4363.  They will inform you of the necessary steps.

Also,go to the IPIF web site and read the newsletter #8 it will explain various options you have to becoming pregnant.

Please call if you have additional questions.  Susanne Emmerich 212 452-1231
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482672_tn?1217111872
I understand your feelings, and all. My mother has IP, as I do, and one ofmy daughters as well. I have one daughter, however that is not affected. I was told when I had my first daughter that I should stop having children. I told him to go to hell...but thats me. I have had 4 miscarrages, most recently in April with twins. Miscarrage (miscarriage) is a real issue with IP, however you can have a child. Feel free to message me if you would like to talk.

Jessica
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Avatar_f_tn
hi im 21 an was born with IP.
i have no wisdom teeth and blemished skin. ive just recently found out im pregnant and im quite worried about how it will effect me and my baby.
i have been told there is a 1 in 4 chance that my child will have it but i have been told that they will just monitor my pregnancy more so than normal but i should be fine.
so i cant see why you cant try for your own baby.
i will let you know if the doc tells me anymore when i go for my appointment on the 18th august.

sarah
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568812_tn?1379169394
My dermatologist was worried i had IP because i have a lot of pigmentation on my arms and back from a rash i had as new born, but they didnt test because its apparently hard to diagnose when your older. I know its an X chromasome linked disease and only girls carry it. I think if a woman becomes pregnant with a boy it will result in miscarriage or stillbirth. Those males who survive have neurological disorders. The reason girls survive is because they have two X chromasomes whereas boys only have the one.

I think thats how it works anyway. Im so glad that theres a forum for this condition. Though its unlikely have it i think its great that its been mentioned. I wish all of you the best of luck and i hope you and future generations go on to have healthy babies!
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632989_tn?1222511732
Hi there,

I am 25 from Australia and i have IP. My husband and I are just about to start IVF with Pre Genetic Diagnosis in which they are able to test the embryos for the genetic disorder. We are doing this in order to stop the IP from passing on. I believe that most IVF centres should be able to do this.

Hope this helps.
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Avatar_f_tn
There are 2 things you can do to insure that you don't pass on the IP gene -
1. Like someone mentioned, you can do an IVF w/PGD procedure.
2. You can get pregnant naturally and do a CVS test in the first trimester to see if the baby has IP, and then terminate the pregnancy in the event of a positive result.

We can safely have children just like anyone else, it just takes some extra precautions is all.  Personally, we've tried both.  The first time we decided to try naturally, and we miscarried naturally because of IP.  The second time, we decided to try the PGD, however we had bad luck and I didn't get pregnant.  Now, we've decided to try naturally again, and I'm currently pregnant and awaiting my CVS results.  There's no "right" answer for IP, since for girls there's just no way to know how affected they'll be.  Everyone has to make their own decisions, but those are the 2 ways to make sure your children will be IP-free.
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762496_tn?1235061997
hi there, i waned to find out how you and your baby are doing... i am currently 7 weeks pregnant and i am very nervous...I also have ip, i am the first one in my family, i am 27 years old... let me know how your pregnancy went.... looking forward knowing from you.
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Avatar_n_tn
Hi there!  I a 25 years old and was diagnosed shortly after birth with IP.  I later had my blood tests sent to Baylor for testing and it was found that I do have IP.  I was married in August of 2007 and my husband and I decided to start having children right away.  When we got pregnant I was scared to death of miscarriage.  At 12 weeks we found out that it looked like it was going to be a girl, from then on I relaxed and just gave everything to God. My pregnancy was great and our daughter was just born in November.  Shortly after birth she was diagnosed with IP, but her case is no different then mine.  I have a very mild condition, only one cone shaped tooth and the pigmentation on my legs, which you can hardly see anymore.  Our daughter is now 4 months old and her rashes are almost completely gone.  We have taken her to an eye doctor to make sure her retina looks alright, and it looks normal.  We are now thinking about baby #2 and will probably start trying again shortly just in case a miscarriage does happen.  I pray your pregnancy goes well!!!  Remember, God has a plan for you!! :o)
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762496_tn?1235061997
Hi JennLynn!

Thank you for your words, i have my first ultrasound tomorrow and i am very nervous about it, I am 11 week and 4 days now, hopefully i hear my baby, i will still be nervous though, i hink that all of my concerns are going to stop once i know the sex of the baby. Thank you again and i will keep you posted!


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Avatar_n_tn
Hi there!!

How did your ultrasound go?  Where do you live?  I am in Michigan.  Has your doctor every heard of IP?  Mine had not, so of course I had to give all of the information to him.  My daughter goes to the same pediatrician office that I went to when I was young so they had heard of IP before. Keep me posted!!

-Jen
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762496_tn?1235061997
Hello!

My doctor's appointment went well, we were able to see (not hear) the heart beat, however the doctor said that it's better to see it than hearing it, the baby's HB is 160 per minute. we are so happy, my husband is incredibly exited and so happy. I am just trying to wait for more time since i feel that i should wait two more months. My doctor has never heard of IP, in fact i had to explain to her everything and brought some paperwork from Genetic counseling that i had gone to a year ago before planning the pregnancy. i guess she understands now that my main concer is to find out the sex of the baby, so she is having me do a test for down syndrome, she says that they will be able to find out the sex sooner by doing this test. i am 11 weeks and 3 days today.

i live in Fremont, CA but was born in Guatemala city, when i was born, there had been only two cases of IP, the doctors had no idea what was wrong with me, my dad who is an OB started searching and found out that it was IP, my condition was severe, only affected my skin and teeth, but i am perfectly normal now. my mom says that i was born with scars on  my skin already and the rash keep comming back in the same spots, but i got better within a year. i am so afraid but i am hoping for the best. hopefylly is a boy so at least there is a better chance of having a normal baby. i will keep you posted. by any change, i have heard that for woman that has IP, they ussually miscariage at 11 weeks...do you know anything about this... i feel so bad for my baby since i don't talk to him or feel anything yet, i guess i am afraid of getting attatch to the baby and then loosing it.... thank you for your support!

Carlota
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Avatar_n_tn
I am so happy you were able to see the babies heart beat!  It is sooo exciting when you get to see the little peanut.  When I was pregnant I was hoping for a boy too, because I knew it would be a healthy boy if it made it.  However, once I found out that it was a girl, I was incredibly happy because I knew that I would not miscarry.  Either way she was going to be healthy, she may just end up with IP, which in my opinion still meant she was healthy, because I am living with IP and am not affected much by it at all.  I haven't heard much about when you can miscarry with an IP boy, however, I did call a women when I was pregnant who had IP and so did her daughter.  When we were talking she told me that she had 4 or 5 miscarriages before having her daughter.  One of the miscarriages happened around 5 months, but she wasn't sure if the baby had IP or not, so she didn't know if that is what caused the miscarriage.  My educated guess would be like you said, before about 12 weeks, that is when everything is falling into place.  My personal email is ***@**** if you want to stay in contact that way too!

Keeping you in my prayers!
Jen
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Avatar_f_tn
Hi, I am 23 years old and I also have IP. My mom has it too. The disease has never bother me much growing up besides my missing teeth during my youth years, yes my friends and classmates did question this but i never let it get to me. I am so glad there are forums online where I can connect with other people with IP, at times I would feel a bit depressed for not knowing more about the disease. I guess the reason why i'm more interested in knowing about IP is because I would like to start a family in a couple of years from now, and would like to know the options there is out there.
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Avatar_n_tn
Hi Veronica,

Growing up I knew I had IP, but I guess it never really bothered me much because it didn't affect my everyday life whatsoever.  I had to have a few teeth surgeries to correct a double tooth and such, but nothing that braces couldn't fix.  I excelled in school too, so mentally and physically I had nothing wrong!  It sounds like the same for you!  When I got married my husband and I considered had invitro and preimplementation genetic testing done before we conceived, but later decided we wanted to put it in Gods hands.  I am so happy to have had a baby girl with IP as well, because her and I both share something really special.  I know there are others who would potentially eliminate a pregnancy if they found out the baby had IP, but I thought to myself that that would never me an option because it would be like killing myself, and I am perfectly normal!  When the time comes you will know what to do.  Remember, there is only a 50/50 chance of you passing along the gene.  I will keep you in my thoughts and prayer!  Where are you from?  I am in Michigan.

Jen
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Hi, my daughter that is now 7 has IP.  I just have a few questions for you.  I'd like to know if the skin discoloration improves with time?  If so, when do you recall a significant improvement?  I'm just trying to understand this disease better.  Right now, the skin discoloration impacts my daughter's self-esteem and her willing to participate in anything.  She feels that people are watching her and the need to always explain what her issues are.  I've been telling her that it will go away as she gets older.  Am I a liar!  I just want to give her hope.
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Hi there!

My skin did improve over time.  As a baby I had dark streaks on my calves, but over time they turned to white streaks.  Now, at 25 they are so faint, none of my friends have ever noticed them, until I point them out.  Tell your daughter they will fade especially as she gets into middle school.  My streaks were mostly on my legs, but daughters legs hardly have any, she has most of her swirls on her stomach area, I am hoping those fade soon too.  
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762496_tn?1235061997
hi jennlynn,

Abigail is here with me! she was born on October 18, 2009. She has IP due to her rash on her right leg and arm righ after born, she is now having them all over her back, the neurologist said that she seems normal and the eye doctor said the same thing, the eye doctor wants to follow up in three months, i am so in love with my daughter but for some reason it makes me sad  even though her rash is nothing like the one i had, my mom says that abigail's skin looks beautiful compare to mine when i was born. my question to you is, with your daughter, did she get more and more of the rushes and when did it stop? everyday i get so sad to see that there might be new ones coming, she is very light skin and also has a regular red baby rush, she woke up today with all this red spots on her forehead and hair but now they are almost done, let me know what the process was with your daughter and what you did to help her skin get through this, email me to ***@**** maybe one day we can chat about this, i really need somebody positive like you. :)
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Avatar_m_tn
Hey,
I just read your post. We have a two month old with IP. Not sure about what kind of NEMO mutation she has as she has not been tested. In our case she had a few blisters when she was born,  when she was a week old almost all of her body was covered in a rash  that had some vesicles and it quickly dissappeared (literally three days). We sought medical help at that point and that is when she was diagnosed. For the first few weeks we were VERY concerned for her. She was seen by an opthalmologist and a neurologist and they both said she is doing well. As far as the rash, she had a few more episodes, currently she has a warty lesion in one of her fingers and one of her legs. She s covered in freckles where she had the rash, but this is hardly noticeable (except on her legs, when it is easy to spot). As far as the rash goes, she had that one episode that was bad, she had a few more lesions later but none of them as big or bad as the first ones.  IT is amazing but the skin will heal, at least it did in our case. It's been almost a month, let us know how your daughter is doing.
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762496_tn?1235061997
Hi there, congratulations on your new baby, mu daughter is doing well, she will be two months on 12/18 her am is doing very well, everything is gone and she just has very light black spots on it....now her legs specially the left one are still trying to heal, it seems they appear one on top of each other, it was really bad, now she has the entire area dark red and black, and haw thick skin on it.... it bleeds sometimes so i am very carefull by not touching her legs to prevent an infection, Aquaphor is great! it makes them soft and according to the dermatologist it wont leave a scar, so i put tons of it and it really helps the blisters...i have not seen any new ones yet... i am very concern about it, not because of the future but to go through it, it is very painfull seeing her skin getting like that. all i keep thinking about is that my daughter could be worse and she is not, my mom reminds me all the time, i had it all over my skin, my mom couldn't even hold me a lt because i would bleed, only my face was clear from it. Is your daughter the first one in your family with ip? I was, now my daughter has it but very mild...my case was worse.... let me know if you have any questions, i will keep you posted as well with little Abigail. :)
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Avatar_f_tn
I am 26 and i was also diagnosed with IP when i was born i have the skin patterns, frizzy hair, i also will never have wisdom teeth i guess that's the gift we get with dealing with all our other teeth being messed up. I have had braces and then a bridge so more than half my mouth is fake teeth. I have 2 children a girl and a boy and neither one of them have it. IP is in our family my grandma her three daughters and i have it. It's so nice to know that there is so many more people out there with the same thing and that we are not alone.
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Avatar_m_tn
i am 22 and was isolated as a baby because i had IP and they thought it was herpes. i have almost no symptoms. just a streak of scars on my leg that was blisters when i was born. other than that i was totally healthy growing up. no skin problems at all. i am about 6 weeks pregnant but havent been to a doctor yet. I am hoping for a girl so it will be much less stressful. From what i've read, if it's a boy there is a 50 percent chance of stillbirth or miscarriage. if it's a girl its a 50 percent chance she will have it. I've read cases where women have given birth to one completely healthy baby boy and then their 2nd boy died 2 days after birth. Nobody else in my family has IP so i dont know how i got the disease. but it has not affected me at all. so hopefully my baby will be just as lucky
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Avatar_f_tn
If you are pregnant, you can have prenatal testing (CVS) done to determine whether or not the baby has IP.  This testing is done between 10-12 weeks.  If you are interested in this, you need to see your OBGYN and a genetic counselor (if you have not already done so) ASAP.  They will need to do an ultrasound to make sure that your pregnancy is dated accurately and can then schedule the test if you are interested in it.  If the baby has IP, there is no way to know prenatally how severely they will be affected.  I am currently 8 1/2 weeks pregnant and will be having a CVS in 2 weeks.  Obviously, this is all a very personal decision.  Keep in mind that if your baby is a boy and you don't miscarry, you should have a healthy baby.  The likelihood of a boy having IP is extremely rare.  If you have any questions, please let me know.  
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Avatar_f_tn
I have had a child with inconentia pigmenti and i have been trying to have another child and havent had any luck. could inconentia pigmenti have affected me?
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Avatar_f_tn
I was also born with IP and am 26 years old. My husband and I are still indecisive on having children, but I would definitely not rule it out. I just am afraid of the outcome I think?
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Avatar_f_tn
Hi, I am 27 years old and my husband and I are planning on trying to have a baby starting in January. I am super nervous bc I have IP myself. It is mild IP as I had the rashes, no "eye" teeth or whatever they are called, and that's all so I am hoping that it won't pass on seeing as how I have no idea how I even acquired IP. My gyno told me not to have children it I really want one of my own.
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