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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.

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Avatar universal
About about to deliver my baby girl that has IP and I'm scared about the caring for blistering and diapering her. Any help is greatly appreciated
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2207528 tn?1338950118
Was diagnosed at birth with IP, only have a few symptoms now. Frizzy hair, cone teeth, and the marble like swirls on my calf muscles. I'm currently pregnant with my second baby. First one was born by labor being induced at 15 weeks due...
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Avatar universal
CVS
To anyone who has had CVS to diagnose IP during pregnancy, how long did it take to get your results back? Thank you!
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Avatar universal
Hi i am 19 and have IP i have a little girl who is three and is not a sufferer she has no signs of it what so ever i on the other hand have the marks and missing teeth and eye issues i also have dyslexia but has improved dramatically ove...
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Avatar universal
Hi, I'm a 23 year old with IP. I think this forum is great, I'm actually glad to know that there are many people with IP out there. Now most of the post are about women having children. My question is based on my mother that also has IP....
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Avatar universal
My daughter was born in April 2015. Around 3 days old I noticed a blister like rash under her armpit after a pediatrician visit, then a dermatologist, then the Children's dermatology department and Luries Children's Hospital in Chicago ...
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Avatar universal
hello everyone! :) my name is Wendy, I am 23 years old. I just now left the dermatologist and was properly diagnosed with IP. Ever since I was in 8th grade I was told I had cafe au lait spots. I developed epilepsy when I was 19 I only ha...
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Avatar universal
My daughter in law and granddaughter both have IP. The baby is now 14 months and has yet to show any baby teeth. They said at 15 months they will see a dentist. Why wait so long, and what do they do if she doesn't have any teeth?
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Avatar universal
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 se...
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Avatar universal
I have 1 healthy son that is now 12, had 1 miscarriage at 9 weeks, and 1 stillbirth of a male at 20 weeks. Does anyone with IP have more than 1 healthy male?
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Avatar universal
We told our doctor we wanted to get an amnio to determine if the baby has IP. My wife already got tested and the mutation was identified by Baylor. We went to see the genetic counselor today and she called Baylor and they said we were cu...
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Avatar universal
Hi! I have a 2 year old little girl who was born with IP. I had my daughter at 18 in January 2010. I took her home the following day agter having her. When she was three days old, she has a big red lump on her head, like a blister, so m...
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Avatar universal
My dr said my baby has hypomelanosis of ito. I was told not to worry about it, then a week ago she started having what looks like a siezure. She only has it when she is sleeping, all of a sudden she opens her eyes and gives thie blank st...
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Avatar universal
Hi my daughter was diagnosed with IP at 2 weeks old, she is now 8 weeks. She had the blisters the day after she was born and all the doctors dismissed it as a severe newborn rash.. it covered most of her body. When she was 5 days old she...
  Posted
Avatar universal
I never heard of IP until 2012 when my 10 yr old daughter had to go see a Cranifacial Clinic at the local Children's Hospital in British Columbia. When she was born at 29+ wks gestation genetics saw her but didn't give any diagnoses as t...
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463897 tn?1448485050
If you or someone you know may be interested in becoming a Community Leader for the Incontinentia Pigmenti community, please send a message to me at: MH Community Mgr Best, Cheryl MH Community Mgr
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Avatar universal
We just had our first baby and she was diagnosed with IP She was born on 09/22. She's a lovely girl, and we really feel blessed to have her. We had a normal pregnancy, however, when she was born she had a few blisters on her body who wer...
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Avatar universal
My daughter was diagnosed with IP about 4 weeks after being born due to the discoloration of her skin. My question, those of you that have IP, I'd like to know if the skin discoloration improves over time. She's 10 now and very shy du...
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Avatar universal
Hi Just found this site and I am so gratefully to read other peoples experiences and get advise. My beautiful daughter is 16 weeks old and she was diagnosed with IP when she was two weeks old. She was born with blisters and they d...
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Avatar universal
I am 29 year old female with IP. I have no major symptoms other that a patch on the back of my head, some brown swirls on the back of my legs, no wisdom teeth. I have found out I am nine weeks pregnant. My partner and I are very excit...
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