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Incontinentia Pigmenti Community

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

21 - 40 (of 206) questions
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Avatar universal
Hi im 21 years old i have IP, i was diagnosed when I was a day old. As i got old i got blood clocks behind my eyes i had to where glasses from the age of four to fifthteen years old. I feel pregnant when i was eighteen i had some problem...
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658757 tn?1397800478
does anyone with incontentia pigmenti have gastroparesis as well? and if so, do you know if its related to the ip?
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Avatar universal
Hi, I'm just wondering if anyone out there with IP or an IP affected child has family members without IP whom have IP related symptoms? My daughter has IP and is considered a spontaneous mutation as there is no one else who has ever ha...
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658757 tn?1397800478
does anyone on here have a child that has incontentia pigmenti and was born with group b strep as well?
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Avatar universal
For the past 7 years or since I started puberty, i noticed a single brown spot appear on the right tip of my penis head. It almost looks like a birthmark or a freckle, but i'm not quite sure what it is. I have never had any sexual contac...
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Avatar universal
Our son was born with a rash on his leg, the doctors immediately diagnosed him with IP and took a biopsy and his blood for a DNA investigation. Now we know that he has XY and not XXY but they still investigate his blood for another mutat...
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Avatar universal
anybody in uk with ip
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Avatar universal
can men pass ip on to there children
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Avatar universal
Does any one know what makes the rash progress through the four stages? I through first it was hormonal or chemical, but I question that because one part of my daughters hand is at stage two and the rest of her body is still at one and h...
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1737603 tn?1310671904
My newborn baby girl has been diagnosed with IP. She appears to have the worst type of IP - the extremely rare form of IP which causes CNS issues and seizures which so far the doctors haven't been able to stop. She is currently at Cedar ...
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Avatar universal
Hi, I have IP. I found out November of 2011 I was expecting, but delivered at 16wks on January 21, due to passing it on to my son. Now I am pregnant with baby #2 and will be 12wks tomorrow. I have my NT scan on the 15th (1 week from toda...
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3098272 tn?1341149793
I would like to know if there is a way I can know the statistics concerning male survivor rate with this disorder
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Avatar universal
My daughter is 13yo with IP. I am wondering how long we should be watchful of eye problems developing due to IP. She has gotten yearly eye exams from a regular eye doctor. She wears contacts and just went up 2 prescriptions in her left e...
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Avatar universal
Hi there my daughter who is 4 was diagnosed with IP @ birth! I live in in Winnipeg, Manitoba and just wondering if anyone else in Manitoba is dealing with this disorder & who they go & see? No one seems to know anything about this diseas...
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482672 tn?1217111872
Anyone here had multi miscarrages related to IP or at least feel that they are IP related? Im pregnant with twins but Ive had fetal demise in the second trimester and Im going to try and get the babies tested but I dont know if I can get...
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Avatar universal
I have had a child with IP and have been trying to get pregnant again and i havent had any luck could IP affect me getting pregnant again?
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Avatar universal
My daughter stopped menstrating, for about 4 years now. Found that she is hypothyroid. Doctors we have seen do not know anything about IP and I think kind of afraid. One pediatric gynocologist sent us home with a subscription for expensi...
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Avatar universal
twice now i heard of babies with ip getting mri why is this? what are they looking for and do all kids with ip have to get them done? any help appreciated
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Avatar universal
We have 3 generations of IP.. my mom has it, I have it and 1 of my daughters have it.. Anyone else out there that have generations with it? and does anyone else have myasthenia gravis with it also?
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1737603 tn?1310671904
I wanted to share with you all, how my life was touched by IP. A little over 5 months ago I was full of hopes and dreams; we were eagerly awaiting the birth of our baby girl Amelie. My pregnancy could not have been easier, the 9 months ...
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