Incontinentia Pigmenti Community
About This 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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KrystingentryDec 27, 2013
krysgentryJan 26, 2013
deanna976Feb 25, 2012
ksaamsFeb 14, 2010
aquillen87Feb 10, 2010
25
By smashrck Blank
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 ...
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Arti Sharma, M.D. Dec 13, 2013
1
By Ang623 Blank
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 anyon...
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Ang623Oct 09, 2013
Ang623Oct 09, 2013
vickycanadaMar 17, 2013
ksaamsJul 29, 2012
Jazz86Jul 16, 2012
18
By shadyridr Blank
We told our doctor we wanted to get an amnio to determine if the baby has IP. My wife already got tested and the muta...
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MarysMom61Sep 14, 2013
NathalyLorraineOct 12, 2012
delethawintersSep 27, 2012
3
By NathalyLorraine Blank
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 t...
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indy5258Aug 04, 2013
IPIFSEOct 15, 2008
2
By eveesmom Blank
My dr said my baby has hypomelanosis of ito. I was told not to worry about it, then a week ago she started having wha...
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S. Kaul, MD Mar 31, 2013
1
By michelemomof3 Blank
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 b...
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Dr. Kokil Mathur Mar 22, 2013
1
By PreemieMom2002 Blank
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 ...
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By MH Community Mgr Blank
If you or someone you know may be interested in becoming a Community Leader for the Incontinentia Pigmenti community,...
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new_dadFeb 17, 2013
new_dadFeb 17, 2013
syd2002Jan 30, 2013
new_dadDec 19, 2010
zirOct 20, 2010
17
By new_dad Blank
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 fe...
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Dr. Kokil Mathur Feb 14, 2013
1
By syd2002 Blank
My daughter was diagnosed with IP about 4 weeks after being born due to the discoloration of her skin. My question,...
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Dr. Kokil Mathur Feb 14, 2013
1
By Car_B Blank
Hi Just found this site and I am so gratefully to read other peoples experiences and get advise. My beautiful ...
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Spanner1988Jan 25, 2013
lounorAug 19, 2009
ksaamsJul 31, 2009
carlotavJul 28, 2009
LaylasmomJul 28, 2009
6
By lounor Blank
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 swir...
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kayleigh1906Dec 02, 2012
amithia24Dec 02, 2012
Julee2Aug 14, 2012
ksaamsJul 12, 2012
IsoquitaJun 14, 2012
5
By amithia24 Blank
Was diagnosed at birth with IP, only have a few symptoms now. Frizzy hair, cone teeth, and the marble like swirls on ...
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By kayleigh1906 Blank
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 ...
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By delethawinters Blank
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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delethawintersOct 12, 2012
rruthSep 27, 2011
IPIFSEAug 17, 2008
3
By shashe34 Blank
Hi, I'm just wondering if anyone out there with IP or an IP affected child has family members without IP whom have I...
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By delethawinters Blank
does anyone on here have a child that has incontentia pigmenti and was born with group b strep as well?
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ksaamsSep 08, 2012
ChirpbirdSep 05, 2012
IsoquitaJun 14, 2012
AWilhelmusMay 24, 2011
LoveofHunterFeb 25, 2010
6
By veronica2104 Blank
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...
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texas1989Aug 31, 2012
BinksehAug 19, 2012
roca770May 22, 2012
sfafsdgMar 05, 2011
cml285Apr 27, 2010
5
By dyldyl Blank
For the past 7 years or since I started puberty, i noticed a single brown spot appear on the right tip of my penis he...
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Ju1ietAug 22, 2012
1
By Ju1iet Blank
Our son was born with a rash on his leg, the doctors immediately diagnosed him with IP and took a biopsy and his bloo...
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