Incontinentia Pigmenti Community
I am so glad I found you all! I have lots to ask about!
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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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I am so glad I found you all! I have lots to ask about!

I'll try to not ask too many questins at once. My daughter Rachael is about to turn 8 weeks old tomorrow and was just diagnosed with IP this past week. I have been very scared and sad and confused!  I have read so many different websites this week and a lot of the informaiton seem to vary as far a risk factors/sided effects and the percentages. The IP foundation website seems to be the best one I've found--and is also how i found this group. We have no family history of IP so we can only assume this was a spontaneous case?? We will be going for gentics counselling soon--will that tell us through blood tests etc. if this is a familial case, and if other female family members need to worry about it too on wither my side or my husbands side (sister,neices)?
We are also waiting for an appointment to a paed. opthamologist. and plan to follow up with our pediatrican to watch her dedvelopment. Is there any other doctors we shoule be seeing too?
Also--as far as the risk of seizures--she hasn't had any--so far so good. Is this something we will always need to watch her for--or is it mainly the first year of life that she is most at risk?
Its just so hard to wait to see what happens (or doesn't happen)--but it seems like thats all we can do...and its all I can think about--is there any time that the fear and worrying will subsided at least a bit--or is there a certain age where we will know she is going to be ok? So far she has been very good and a good baby--at 8 weeks old is that a reassuring sign?
One last thing--is anyone else in this group Candian? We are in Paris,ON
thanks for listening.............  
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621484_tn?1221545859
Hi.  I'm completely new to this site, but thought it would be interesting to check out the forums.

I have IP, but don't seem to be too terribly affected.  By that, I mean I haven't had any issues with hair, teeth, retinal problems, or neurological anything.  I'm normal except for the stupid pigmentation.

My pigmentation didn't come out until I was about 6 or 8 weeks old.  At which time, I got a high fever (around 106 F).  After my parents took me to the hospital and they got the fever down, I broke out into the blistery type rash.  Still, to this day, whenever I get a fever, the pigmentation on my stomach gets slightly raised.

My most affected areas are on the right side of my body.  My right calf, the right side of my stomach, etch.  Overall, it's faded considerably since I was little (I'm 24 now), at least on my calf.  It's still a darkish brown on my stomach.

I'd say the way it affects me most is just the embarrassment.  For example, I don't like to wear a bikini in public because I don't want everyone to stare at me and ask questions.

My mom seems to have a hypo-version of it.  When she gets tan on her forearms, you can see light streaks.  Too bad for me I have the hyper-version with the darker marks.   My mom did have 2 miscarriages before having me and my brother.  I can only assume they were boys who received the defective gene.  But, she did have my brother.

It sounds like you're doing everything right.  I mean, I grew up as a normal kid-no issues whatsoever.  In fact, I went to a genetic counselor when I was about 18, and she was almost shocked to see me because I didn't exhibit any of the more normal symptoms of this condition, such as hair and teeth problems for example.

I guess I don't have too much advise as to what to do right now.  I just remember going to the dermatologist a lot as a kid.  Like I said, the most difficult part for me are the social issues.  It was hard growing up as a kid, when I'd wear shorts, kids would tell me I had mud on the back of my legs, which is what it kind of looked like.  But, if anything, it's taught me a lot about how to deals with the things you don't like about yourself.  I suppose everyone has something they don't particularly like about themselves.

Was I any help?
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Avatar_f_tn
I'm the Exec. Dir. of IPIF.  

For about 5 years years your daughter's eyes should be examined by a Pediatric Ophthalmologist.  The web site has directions of how this exam should be done.  IP is a dominant gene and it is unlikely that it is carried in other family members.  As it almost always male lethal it could not have come from your husband either, so the members of his family need not worry.  At the moment it does sound as though this was a spontaneous mutation.

Seizures occur most of the time very early on, so the longer your daughter goes with no neurological problems the more you can stop worrying.

It is difficult to wonder what will happen to your daughter in the long run, but as most symptoms occur very early the only issue could eventually be problematic teeth.  This is the most common symptom but of course it is a wait and see.

If you have any other questions please let me know.

Susanne Emmerich

It

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632989_tn?1222511732
Hi there,

I am 25 years old and i have IP, My sister is 17 and she also has this condition. We are from Australia and i believe that there are less than 100 cases over here. In our family it is hereditary as far as i know from my Grandma she doesnt really know too much about it before her. My younger sister had the case of seizures and the doctors put it down to epilepsy, she was in the hospital from birth for a few weeks but never had them since, so i am guessing that it wasnt epilepsy, more the IP. The side affects that i have from IP are:

Teeth - All of my life i have had a large gap between my two front teeth as the teeth next to it never grew, when i was about 16 i got braces and that pushed them together leaving enough room for a plate with false teeth beside them. No one has ever really known the difference and the good thing about it is that i will probably never get wisdom teeth, so thats a plus. My younger sister had the same problem however her gap was slightly larger however they are doing the same process with her.

Bald Patch - I have a small bald patch on the top of my head nearer to the centre, apart from not being able to wear pig tales (which were so 80's anyway) i have not had any problems. Apparently my Grandmother has had to have hers removed and my mother has a lump on her bald patch and im thinking that she will have to have it removed also .. just something to look forward to

Hypo & Hyper Pigmentation - I have both, only a small amount of the hyper a few brown marks even maybe just the one however the hypo is the lighter streaks mostly on my legs which do not colour so i just dont tan

As far as i know that is about it, i believe that we are on the rarer side of the spectrum and we have all lived healthy lives. Kids at school are about the only worry i had growing up. My husband and I are actually about to start IVF with Pre Genetic Diagnosis so that we can stop the IP in our family. I hope that this information has been helpful and in this day and age there has been alot more research into IP.

Wishing you and your daughter all the best.
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