Incontinentia Pigmenti Community
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Avatar universal

Any symptoms at adult age?

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. She had a retina detachment at the age of 30, she under went surgery and the drs were able to save her sight, also two years ago she had a seizure out of nowhere, she had many tests done and dr's could not determined the cause, but she has been fine ever since. She did not mentioned to the drs about her having IP. I was just wondering if these two incidents could have happened because of IP. If anyone else has gone through this. Perhaps there is no connection at all, I'm just wondering.


9 Responses
Avatar universal
My daughter has incontinentia pigmenti and we need some up to date knowledge of the condition, how this will effect her when she wants children etc
1171787 tn?1295546231
Yes, retinal detatchment and seizures are some of the symptoms of IP. I would recommend your mom letting the docs know that she has IP because they would be able to monitor her eyes and brain. I know another mom whos daughter has had a terrible time with her eyes. At the very least encourage her to get regular check ups with an eye specialist.
Avatar universal
This is something we are going through right now with our mother.  She has had some eye problems, but our biggest issue is she keeps having mini seizures.  They keep saying they don't know what is going on, but we are going to present this to them today.  Have you been able to find any other information on this?  This also concerns me because my sister and I also have incontinentia pigmenti.
Avatar universal
Were there any developments on your mom's case? I have IP and we believe my mom has it too, too many symptoms that make sense. My mother had retinal detachment at around the age of 30 too. I am 25 and started having floaters in my eye. I am freaking out and looking to go see a doctor as soon as possible. I do believe there is a connection but like you said, everyone always talk about their children with IP. How about us adults? any thoughts?
3245056 tn?1346875456
If you have IP, then your mother HAS to have it. That said, I found out in my 40s that my mom had to have had IP. This is because my great-niece has it. Don't panic. Inform your doctor of the condition, and bring information about it with you to your appt.

As to floaties, I would sincerely not panic. I think they are quite common, and not solely due to IP. Get annual eye exams, and make sure that doctor knows about the possibility of eye complications. He/she may refer you for further exams.
Avatar universal
Actually, about 50% of IP case are spontaneous mutations, so it is possible for someone to have it and there mother not to have it.  I am a spontaneous mutation.
Avatar universal
I waz born with IP in 1975 iam in a medical book  with it I blind in one eye n did have misshaped teeth out do have daughter with it to she didn't walk till she was 4 years old
Avatar universal
your daughter didn't walk till she was 4 years old because of the ip?  Did you have a lot of the rash and discolored skin as a baby?  My daughter is 6.5 months old and has only had a small rash a few times but she has no teeth yet which is concerning....
Avatar universal
Hi i have IP and im currently 19 i have a little girl that is not effected at all and she is also 3 still no signs i had serve dyslexia when i was little but found that from trying unusual learning techniques i cached up rather fast. My mum was told id have mental issues which i did but not to the existent of what they said nd that id suffer with seizures which i did for the first year i have missing teeth but not noticeable as they don't look like they were supposed to be there anyways and my eyes were till bout three years ago deteriorating constantly but aince seeing an eye specialist about IP and getting correct glasses they have stayed the same x
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